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2: The pancreas, insulin and diabetes

First published 1998


Second edition 2001; reprinted 2003, 2005, 2007, 2009
Third edition 2010
Copyright © 2010, Children’s Diabetes Services
This work is copyright. Apart from any use as permitted under the Copyright Act 1968,
no part may be reproduced by any process without prior written permission from the
publisher.
National Library of Australia Cataloguing-in-Publication data:
Caring for diabetes in children and adolescents. Third edition.
Bibliography.
Includes index.
ISBN 978-0-9579443-3-6
1. Diabetes in children. 2. Diabetes in adolescence. I. Ambler, Geoffrey Richard. II.
Cameron, Fergus John. III. Gillbank, Jan (Illustrator)
616.462
1st and 2nd editions produced by the Open Training and Education Network –
Distance Education (OTEN–DE),
New South Wales Department of Education and Training
Graphic design, Jan Gillbank and Sue Hunter
Cover design, Jan Gillbank
Desktop publishing, Kim Wood
Illustrations, Jan Gillbank
Copy editing and indexing, Fiona Sim
Project management, Barbara Cram and Fiona Sim
Printed in Australia by National Capital Printing

3rd edition produced by Blue Star Print Group


Printed in Australia by Blue Star Print Group
Graphic design, Jean Penny
2: The pancreas, insulin and diabetes
Foreword
I am pleased to be asked to introduce the 3rd edition of this popular manual for
families facing the challenge of taking care of diabetes in their child. It is a step by
step outline of what diabetes is and the practical details needed for everyday care.
Previous editions of this manual since 1998 have successfully empowered families
with the practical knowledge on how to take charge of their child’s diabetes.
The popularity of these manuals has been such that they have been translated into
several languages. The manuals have reflected best practice and have been used by
diabetes centres around Australia and New Zealand as the main source of advice for
parents with a child with diabetes. They have given families detailed advice in an easy
readable way so that even unexpected challenges such as sick days can be safely
managed at home.
Whilst this current manual is an essential resource for families new to diabetes, it is
also highly recommended as an update for those already experienced in diabetes.
Exciting new research is continually improving diabetes management and new and
more effective ways of controlling diabetes are constantly being introduced. Because
most diabetes management occurs at home, parents also need to be updated of any
advances in controlling their child’s diabetes. This edition contains detailed
information on many new advances including new ways of monitoring diabetes
control and new insulin delivery systems, iesuch as continuous glucose monitoring
systems integrated with insulin pump therapy.
The manual is truly comprehensive and provides guidance on the wide spectrum of
issues impacting on diabetes. The advice offered has taken into account the
recommendations in the latest national (NHMRC) and international (ISPAD)
evidence-based guidelines. It covers diabetes in all of the ages and stages between
infancy and adolescence and addresses the latest recommendations for targets to aim
for in diabetes control. Issues such as hypoglycaemia treatment and prevention, diet,
carbohydrate counting and insulin adjustment for carbohydrate quantity, schools,
camps, preventing diabetes complications, screening for associated conditions like
thyroid problems and coeliac disease, and, the impact of psychological factors, are all
comprehensively covered. Whilst much of the manual is devoted to type 1 diabetes,
an expanded section on type 2 diabetes in adolescents is included.
The editors, Associate Professors Geoff Ambler and Fergus Cameron, and the many
contributors, are to be congratulated on producing this updated and comprehensive
guidance for parents in caring for diabetes in their children or adolescents. It will
instil confidence in the minds of parents and provide them with the confidence and
information needed to be important members of the team caring for their child’s
welfare.

Professor Martin Silink AM, MB BS (Hons), MD, FRACP


The Children’s Hospital at Westmead and theUniversity of Sydney

President, 1986-1988, Australasian Paediatric Endocrine Group (APEG)


President, 1999-2002, International Society of Pediatric and Adolescent diabetes (ISPAD)
President, 2006-2009, International Diabetes Federation (IDF)

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2: The pancreas, insulin and diabetes
Contents
Foreword to the 3rd edition iii
Contents v
Contributors xiv
Introduction xv
Chapter 1 Diabetes – the basics 1
What is diabetes? 1
Why does diabetes occur? 1
Treatment of diabetes 1
Chapter 2 The pancreas, insulin and diabetes 2
Insulin and the pancreas 2
Insulin, food and energy 2
What is diabetes? 4
What causes type 1 diabetes? 4
What are the symptoms and signs of diabetes? 5
Ketoacidosis 6
How is diabetes diagnosed? 6
Can the pancreas recover? 6
How common is diabetes? 6
What are the risks for other family members? 7
Associated video resource for this chapter 7
Common questions and answers 8

Chapter 3 What to expect at the time of diagnosis 9


The diabetes team 9
What happens at diagnosis 10
Outpatient stabilisation 10
Hospital admission 11
Other things that happen in the first week 12
Common questions and answers 13

Chapter 4 Coping with Diabetes 14


Coping with the diagnosis – first feelings 14
How to cope 15
Children’s feelings 15
Family relationships 16
Brothers and sisters 16
Coping after the diagnosis 16
Financial assistance 18
Health Care Card and Carer’s Allowance 18
National Diabetic Services Scheme (NDSS) 18
Others 18
Common questions and answers 19

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2: The pancreas, insulin and diabetes

Chapter 5 Insulin Treatment 20


Managing diabetes 20
Different types of insulin 21
Insulin types used in Australia 21
Rapid and short acting insulins 21
Long acting insulins 22
Beef insulins 22
Pre-mixed insulins 22
Different patterns of insulin dosage 22
Four times daily injections – basal-bolus or multiple daily
injections (MDI) 24
Two or Three times daily injections 25
Other patterns of insulin dosage via injection 26
Insulin pump therapy 26
What is the right pattern and dose of insulin for my child? 26
Devices for insulin injections 27
Insulin pens 27
Insulin syringes 27
Automatic injection devices 28
Needless devices (jet injectors): 28
How to give an insulin injection 28
Checking the insulin before injecting 28
Giving an injection with a pen 29
Mixing insulins in a syringe 31
Giving an injection with a syringe 31
Injection sites 31
Disposal of syringes and pen needles 33
Insulin storage 33
How long to wait between the insulin injection and eating 33
Common injection problems and how to avoid them 34
Leaking of insulin after the injection 34
Slight bleeding and a small bruise 34
Painful injections 34
Fatty lumps around the site of injection (lipohypertrophy) 35
Hot temperature and insulin absorption 35
Mistakes with insulin doses 35
Common questions and answers 36

Chapter 6 Food and healthy eating 38


Introduction 38
The Australian dietary guidelines for children 38
Components of food 39
The healthy living pyramid 40
Carbohydrate 41
Carbohydrate: when, how much and what type? 41
When to eat 41
How much to eat 43

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2: The pancreas, insulin and diabetes
Using carbohydrate counting in the diabetes management plan 44
Type of carbohydrate and the glycaemic index (GI) 45
What about sugar? 48
Artificial sweeteners 48
Special diabetic products 48
Proteins 49
Fats 49
Why should we eat less saturated fat? 50
How can we eat less saturated fat? 50
Fibre: make sure your child has enough 51
Fluids 51
‘Free’ foods 52
Reading food labels 53
Information to look for 54
Examples of labels 55
Questions to ask yourself when reading food labels 56
Ingredients in disguise 57
Nutrition claims on food labels 57
Advice for specific age groups 58
Infants and toddlers (under five years) 58
School-age children 58
Adolescents 58
Children’s parties 59
Healthy takeaways 60
Adapting recipes 60
Snack ideas 60
Diabetes and coeliac disease 61
Common questions and answers 62

Chapter 7 Monitoring diabetes control 64


Blood glucose monitoring 65
Blood glucose meters 65
Obtaining the blood sample – lancet devices (finger prickers) 66
When should we test? 67
Recommended testing 67
Performing a test and recording 68
What are the target blood glucose levels? 69
Realistic expectations and problems with blood glucose levels 70
Unstable blood glucose levels 71
Haemoglobin A1c 71
Ketone testing 71
Continuous glucose monitoring systems (CGMS) 72
Non-invasive blood glucose monitoring 73
Common questions and answers 74
Should we be using CGMS? Our son is not keen on the idea and it
seems expensive? 75

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2: The pancreas, insulin and diabetes

Chapter 8 Hypoglycaemia (low blood glucose levels) 76


Symptoms of hypos 77
What causes hypos? 78
What to do for a mild or moderate hypo 78
Step 1 78
Step 2 78
What to do for a severe hypo 80
Giving a glucagon injection with the GlucaGen hypokit (Novo Nordisk) 81
Recovery from a severe hypo 82
Mini-dose glucagon treatment 82
How often do hypos happen? 82
Night hypoglycaemia 83
Hypoglycaemia unawareness 84
Common questions and answers 85

Chapter 9 Hyperglycaemia (high blood glucose levels) 87


Recommended target ranges: 87
Why blood glucose levels may be high 87
What to do about high blood glucose levels (above 15 mmol/l) 88
If receiving insulin via injections: 88
If receiving insulin via a pump: 89
Common questions and answers 90

Chapter 10 Sick Days 92


Sick days – introduction 93
What are ketones? 93
What is ketoacidosis? 94
How to test for ketones 94
Testing for ketones in the blood 94
Testing for ketones in the urine 94
When to test for ketones 95
Guidelines for sick days 96
Giving extra insulin during sick days 97
How to calculate the amount of extra rapid or short-acting insulin
to give for sick days: 98
How do I decide how much extra insulin to give – 5 per cent,
10 per cent or 20 per cent? 98
Illnesses with low blood glucose levels 99
Mini-dose glucagon 100
Foods and fluids for sick days 102
Surgery and anaesthetics 103
Common questions and answers 103

Chapter 11 Exercise and Sports 105


Benefits of exercise 105
Exercise and diabetes 105
Guidelines for exercise and diabetes 106
Before exercise 106

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2: The pancreas, insulin and diabetes
How to adjust for exercise 107
Insulin adjustment for exercise 107
Extra carbohydrate before and during exercise 108
Delayed hypoglycaemia after exercise 110
Exercise adjustment examples 110
When is it unwise to exercise? 112
Associated video resource for chapter 11: 112
Common questions and answers 113

Chapter 12 Insulin adjustment 115


Why does insulin need adjusting? 116
Principles of insulin adjustment 116
Guidelines for insulin adjustment on a 2 or 3 injections per day 117
1. Overall adjustment to usual doses (pattern adjustments) 118
Which insulin dose to adjust? 118
By how much should doses be adjusted? 119
2. Day to day adjustments (flexible daily adjustments) 120
Guidelines for insulin adjustment for multiple daily injections: 121
1. Conventional MDI with consistent carbohydrate intake 121
Which insulin dose to adjust based on blood glucose patterns? 121
By how much should I adjust doses? 122
2. Flexible multiple daily injections (flexible MDI) 122
3. Insulin to carbohydrate ratio (ICR) 124
Which method ? 124
Correction doses (“fix-up” adjustments) 124
Insulin adjustment examples 125
Common questions and answers 128

Chapter 13 Type 2 Diabetes 129


What is type 2 diabetes? 129
Why do people get type 2 diabetes? 129
Diagnosis of type 2 diabetes 130
Treatment of type 2 diabetes 130
Change to a healthier lifestyle 131
Weight control 131
Food plan and healthy eating 131
Exercise 133
Monitoring and follow-up 134
Screening for complications – blood pressure and lipids 134
Medications for type 2 diabetes 134
Sick days and type 2 diabetes 135
Type 1 and type 2 diabetes (combination) 136
Screening for insulin resistance and type 2 diabetes 136
Common questions and answers 137

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2: The pancreas, insulin and diabetes

Chapter 14 School and Diabetes 139


Information and education 139
Hypoglycaemia (hypos) 141
Contents of a hypo pack 141
Insulin doses and glucose testing at school 141
Poster for staff room 142
Identification 142
Food 142
Exercise 142
Letting others know 142
Participation 143
Behaviour and discipline 143
Blood glucose levels and effects on learning and examinations 143
High blood glucose levels 144
Sick days or emergencies 144
Associated video resources for this chapter 144
Common questions and answers 145

Chapter 15 Different age groups and diabetes 146


Toddlers and preschoolers 146
School-age children (six to 11 years) 147
Adolescents 148
Adherence and general management issues 148
Transition to independent adult care and adult diabetes services 149
Appropriate career options 149
Growth and puberty 149
Weight issues 149
Smoking 150
Drugs 150
Alcohol 150
Contraception 151
Driving 151
Diabetes alert identification 151
Ear piercing, body piercing and tattooing 151
Associated video resources for this chapter 152
Common questions and answers 153

Chapter 16 Follow-up visits and long-term management 155


Moving on from the first phase 155
Long-term follow-up 157
Regular visits 157
Annual review 157
Complications screening 157
Diabetes outreach and shared care 157
Other diabetes supports: workshops, seminars and diabetes camps 158
Goals for long-term management and control 158
What does the haemoglobin A1c (HbA1c) tell you? 158

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2: The pancreas, insulin and diabetes
Recommended control targets 159
Relationship between blood glucose levels and HbA1c 160
Problems with control 160
Insulin omission and other control problems 161
Insulin omission (forgetting or missing doses) 161
Problems with blood glucose monitoring 162
Problems with food 162
Diabetes ‘burn-out’ 162
Transition to adult care 163
Associated video resource for this chapter 163
Common questions and answers 164

Chapter 17 Travelling, holidays, camping and other


special situations 166
Preparing for travel 166
Things to consider 166
Review by the diabetes team 166
Letters and contacts 167
Immunisations 167
Travel insurance 167
Contact with the airline 167
Supplies 167
Preparation in case of sick days 168
Food and hygiene issues 168
Reference information 168
Changes to timing and routines 168
Overseas flights and time zone changes 168
Sleeping in 170
Getting up earlier 171
Going to bed later 171
Eating out late 171
Staying over at a friend’s house 171
Diabetes camps 171
School camps 172
Preparing for camp 173
Fasting, e.g., religious or other reason 173
Associated video resource for this chapter 174
Common questions and answers 175

Chapter 18 Insulin Pumps 176


What is an insulin pump? 176
Outline of insulin pump therapy 177
Potential advantages of insulin pumps 178
Better blood glucose control and HbA1c 178
More accurate insulin delivery 178
Flexibility and lifestyle benefits 178
Potential disadvantages of insulin pumps 178

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2: The pancreas, insulin and diabetes

Being permanently attached to a ’machine’ 178


More blood glucose testing 178
More rapid development of ketones or ketoacidosis 178
Skin infections or irritation 179
Cost 179
Diabetes management on a pump is a team effort 179
Steps in commencing insulin pump therapy 179
Suitability for a pump: 179
Preparation for starting on the pump: 180
Wearing the Pump 180
Infusion sets and tapes 181
Site selection and rotation 181
Disinfecting the skin and avoiding infection 181
Tapes and skin preps 181
Infusion site and site problems 181
Disconnecting and reconnecting the pump 183
Disconnecting 183
Reconnecting 183
Insulin types 183
Setting the pump rates 184
Starting rates and total daily dose of insulin 184
Basal insulin 184
Bolus doses 185
Boluses for meals and snacks (Carbohydrate boluses) 185
Correction boluses (using the insulin sensitivity factor) 186
Negative correction 186
Insulin-on-board (also called active insulin) 187
The bolus wizard or bolus calculator – examples 187
Adjusting the pump rates 188
Adjusting basal rates 188
Adjusting carb boluses 190
Adjusting the correction factor or insulin sensitivity factor (ISF): 190
Keeping a record of pump rates and changes 191
Monitoring and target ranges 191
Blood glucose monitoring 191
BGL targets 192
Continuous glucose monitoring systems (CGMS) 192
Hemoglobin A1c targets 194
Measuring ketones 195
Food and carbohydrate counting 195
Carbohydrate counting 195
Square and dual-wave boluses 195
Flexibility with food intake on a pump 196
High blood glucose levels and sick days 196
High blood glucose levels 196

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2: The pancreas, insulin and diabetes
Example: 198
Sick days 198
Hypoglycemia 199
Treating a mild hypo 199
Treating a severe hypo 200
Frequent or recurrent hypos 200
Hypoglycemia unawareness 200
Exercise 200
Pump-on, reduced basal rate, ± extra carbohydrate 201
Bolus insulin adjustment with exercise 201
Pump-off for exercise 201
Exercise examples: 201
Pump discontinuation – using injections again 202
Most frequent challenges for pump users 203
Obtaining supplies and service back-up 204
Common questions and answers 205

Chapter 19 Complications 206


Minimising the risk of complications 206
Complications screening 206
Long-term complications 207
Eye problems 207
Kidney problems (nephropathy) 208
Chapter
Nerve problems (neuropathy) 208


Vascular disease
Foot problems
208
208
1
Medical conditions that are of higher risk with diabetes 209
Thyroid problems 209
Coeliac disease 209
Common questions and answers 210

Chapter 20 Research and Future of Diabetes Management 211


Finding a cure for diabetes 211
Diabetes prevention 212
Improving management techniques 212

Chapter 21 Resources 214


Diabetes organisations 214
The Internet 214
Books 215
Videos / DVDs 215

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2: The pancreas, insulin and diabetes

Contributors
The following health professionals (in their current or previous roles) and diabetes
teams have made valuable contributions to this or previous editions of this resource.
Elizabeth Ambler, Dietitian, The Children’s Hospital at Westmead
Geoffrey Ambler, Paediatric Endocrinologist, The Children’s Hospital at
Westmead (Chief Editor & author)
Don Anderson, Paediatric Endocrinologist, John Hunter Children’s Hospital,
Newcastle
Margaret Barclay, Social Worker, The Children’s Hospital at Westmead
Vicki Barron, Diabetes Educator, Sydney Children’s Hospital, Randwick
Dianne Bell, Social Worker, The Children’s Hospital at Westmead
Deidre Burgess, Dietitian, John Hunter Children’s Hospital, Newcastle
Fergus Cameron, Paediatric Endocrinologist, Royal Children’s Hospital,
Melbourne (Editor & author)
Samantha Clarke, Diabetes Dietitian, The Children’s Hospital at Westmead
Maria Craig, Paediatric Endocrinologist, The Children’s Hospital at Westmead
Trish Crock, Paediatric Endocrinologist, John Hunter Children’s Hospital,
Newcastle
Angie de Casanove, Social Worker, The Children’s Hospital at Westmead
Kim Donaghue, Paediatric Endocrinologist, The Children’s Hospital at Westmead
Gabrielle Donlevy, Dietitian, Royal North Shore Hospital
Jan Fairchild, Paediatric Endocrinologist, Women’s and Children’s Hospital,
Adelaide
Rebecca Gebert, Diabetes Educator, Royal Children’s Hospital, Melbourne
Heather Gilbertson, Dietitian, Royal Children’s Hospital, Melbourne
Nuala Harkin, Diabetes Nurse Practitioner, The Children’s Hospital at Westmead
Rachel Hayes, Diabetes Dietitian, The Children’s Hospital at Westmead
Kristine Heels, Diabetes Services Manager, The Children’s Hospital at Westmead
Neville Howard, Paediatric Endocrinologist, The Children’s Hospital at Westmead
Carolyn Judge, Diabetes Educator, The Children’s Hospital at Westmead
Helen Kepreotes, Dietitian, Sydney Children’s Hospital, Randwick
Bruce King, Paediatric Endocrinologist, John Hunter Children’s Hospital,
Newcastle
Rachel Le Cocq, Diabetes Educator, The Children’s Hospital at Westmead
Chris May, Diabetes Educator, Sydney Children’s Hospital, Randwick
Angela Middlehurst, Diabetes Educator, Diabetes Australia, NSW
Michelle Neylan, Diabetes Educator, John Hunter Children’s Hospital, Newcastle
Elizabeth Nunn, Diabetes Educator, John Hunter Children’s Hospital, Newcastle
Anna Pham, Diabetes Dietitian, The Children’s Hospital at Westmead
Royal Children’s Hospital, Brisbane, Diabetes team.
Martin Silink, Paediatric Endocrinologist, The Children’s Hospital at Westmead
Carmel Smart, Dietitian, John Hunter Children’s Hospital, Newcastle
Charles Verge, Paediatric Endocrinologist, Sydney Children’s Hospital, Randwick

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2: The pancreas, insulin and diabetes
Introduction
Caring for diabetes in children and adolescents is a challenging task for families and
their health professionals. Education and knowledge are essential elements in
being able to look after your child’s diabetes from day to day and in special situations.
This resource aims to provide this information for you. It will help you revise and
build on your knowledge from your diabetes education and also serve as a ready
reference when new situations arise.
While teaching will differ slightly between different diabetes centres, the content has
been contributed to and edited by health professionals from major children’s diabetes
centres in Australia: therefore it reflects a common approach and practice.
This resource also takes into account the current guidelines from the National Health
and Medical Research Council (NHMRC) and the International Society of Paediatric
and Adolescent Diabetes (ISPAD) and assists with their practical application.
This third edition includes significant revisions and updates, particularly on insulin
therapy and insulin pump therapy. Parents, grandparents, friends and other carers, as
well as young people with diabetes, will find this book useful. We hope it helps you.
Please note: The information in this resource has been carefully checked and is
believed to be accurate at the time of production. If you are unsure of whether any
particular information is appropriate or applicable to your child, you should check
with your diabetes team first.
Brand names or trade names are used for clarity in places throughout the book.
It is recognised that these are the registered property of the respective companies.
The production of this third edition has been supported by an unrestricted
educational grant from Novo Nordisk Pharmaceuticals. Chapter

The production of this third edition has been supported by an


unrestricted educational grant from Novo Nordisk Pharmaceuticals.

Caring for diabetes in children and adolescents xv


2: The pancreas, insulin and diabetes
1: Diabetes – the basics
Chapter 1 Diabetes – the basics
This resource will help you and your family learn about diabetes and will be useful to
look up when you need to check information at home. It has been written by health
professionals who have extensive experience in caring for children and adolescents
with diabetes. This first page gives some key points about diabetes; these points are
covered in detail later.

What is diabetes?
Type 1 diabetes is the common form of diabetes in children and occurs when the
pancreas is unable to make enough insulin. Insulin is a hormone which allows the
body to use glucose in the blood as energy. The glucose in the blood comes mainly
from the food we eat and from stores in the liver and muscle. When a person has
diabetes, the blood glucose level rises because of the lack of insulin and they become
unwell with the symptoms of diabetes which may include excessive thirst, excessive
urination, weight loss and dehydration. Type 1 diabetes always requires insulin
treatment.
Type 2 diabetes is a different form of diabetes that is less common in children and
teenagers but common in adults. The pancreas can still produce insulin but the body
is resistant to the insulin working. It is often associated with being overweight and is
discussed in detail in chapter 13 – 'Type 2 diabetes'. Type 2 diabetes may not need
insulin treatment.

Why does diabetes occur?


Some people carry genes that make them more likely to get diabetes. Type 1 diabetes Chapter
develops in these people only when something triggers the immune system to start
damaging the pancreas. These triggers are believed to be factors in the environment,
but are still not well understood. There are also genetic risk factors for type 2 diabetes,
1
but the major risk factors are being overweight, inadequate exercise and unhealthy
eating patterns.

Treatment of diabetes
The care of children and adolescents with diabetes requires a team of specialised
health professionals who educate your child and family in diabetes management and
help you and your family look after the diabetes.

The main aspects of type 1 diabetes care are:

u R
 eplacement of insulin by giving insulin injections several times each day
or using an insulin pump
u A healthy food plan, with a regular intake of carbohydrate-containing
foods
u Frequent monitoring of blood glucose levels
u A healthy amount of exercise
u Regular review by the diabetes team
The aim is that children and adolescents with diabetes and their families will
be happy, healthy, well-adjusted and grow up and develop normally in all
respects.

Caring for diabetes in children and adolescents 1


2: The pancreas, insulin and diabetes

2: The pancreas, insulin and diabetes


Chapter 2 T
 he pancreas, insulin and
diabetes

Key Points
u In type 1 diabetes the pancreas can’t make enough insulin, causing
the blood glucose to be too high
 iabetes in children is usually type 1 diabetes and needs treatment
u D
with insulin by injection or insulin pump
u F requent passing of urine, thirst, drinking a lot, weight loss and
tiredness are the common symptoms of diabetes
u W
 e don’t fully understand what causes diabetes, but genes and
things in the environment are likely factors

Insulin and the pancreas


Insulin is a hormone produced by special cells (called beta cells) in the pancreas.
Hormones are chemical messengers that circulate in the blood, sending messages
to other parts of the body. The pancreas is located deep in the upper part of the
abdomen, behind the stomach (see the illustration). The pancreas has two main
functions:
1. Digestion of food – the pancreas produces enzymes that are released into the
bowel after a meal to help digestion of food. Diabetes does not affect this part of
the pancreas.
2. Production of hormones – there are groups of cells in the pancreas called islets of
Langerhans that produce a variety of hormones – insulin and glucagon are two
important ones. These hormones help to regulate energy in the body. In diabetes,
the main problem is that the cells that make insulin (the beta cells) are damaged
and therefore blood glucose levels become elevated. The glucagon producing cells
also become damaged which adds to the loss of glucose regulation later, even
when insulin is being replaced. This is because glucagon’s function is to help
increase blood glucose levels if they become too low.

Insulin, food and energy


After we eat, the food is digested in the stomach and the upper part of the bowel.
The nutrients from the digested food are taken into the bloodstream.
The carbohydrates (sugars and starches) in our food are broken down into glucose
which enters the bloodstream. This glucose is used immediately for energy or can be
stored in the liver or muscle as a substance called glycogen. Glucose can be released
from glycogen when needed and glucose output from the liver and muscle contributes
to blood glucose levels, as well as food that has been eaten recently.

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2: The pancreas, insulin and diabetes
Position of the pancreas in the body

We need insulin to help the body use glucose from the bloodstream for energy.
Glucose is the major energy source for the cells of the body, but normally glucose
can only pass from the bloodstream into cells if insulin is present. If there is no
insulin, blood glucose levels will be high but none of the glucose can be used for
energy since it cannot enter the cells. Insulin has been described as being like
“a key that unlocks the door of cells” and lets glucose in to be used for energy.
Chapter

How insulin helps the body use glucose from the bloodstream for energy

Ketones are other substances that the body can sometimes use for energy if it cannot
use glucose. In people without diabetes, ketones start to be produced from fat as an
alternative energy source when supplies of glucose are becoming low, such as during
fasting or illness. This can sometimes be the case in people with diabetes but usually
in diabetes, production of ketones means there is a lack of insulin and the glucose
that is present in the blood is unable to be used for energy. You will learn more
about ketones in chapter 10 ‘Sick days’.

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2: The pancreas, insulin and diabetes

What is diabetes?
Diabetes mellitus (often just called diabetes) occurs when the body cannot produce
enough insulin, or when the insulin that the body makes does not work properly.
The name comes from the ancient Greek word ‘diabetes’ meaning siphon or running
through (referring to the passing of large amounts of urine) and ‘mellitus’ meaning
honey-like (referring to the sweetness of the urine due to excess sugar as identified by
ancient physicians).
There are two main types of diabetes and some other less common forms:
Type 1 diabetes mellitus is the type that is almost always found in children and
adolescents and occurs because the pancreas loses the ability to make insulin.
People with type 1 diabetes need insulin treatment to stay alive. In the past,
type 1 diabetes was sometimes called insulin-dependent diabetes mellitus (IDDM).
Most of this resource is about type 1 diabetes, but there is also a section on type 2
diabetes.
Type 2 diabetes mellitus usually affects older people but is increasingly
being seen in younger people. It is often associated with being overweight.
These people make some insulin but the insulin does not work well. Type 2 diabetes
can often be controlled by changes to diet and weight control but may need tablets
or insulin injections. Type 2 diabetes is covered in more detail in chapter 13
‘Type 2 diabetes’.
Other types of diabetes occur much less commonly and are usually associated
with other conditions that damage the pancreas (usually called secondary diabetes).
There are also some rarer genetic forms of diabetes. When diabetes is diagnosed, tests
will usually be done to clarify the type of diabetes present, especially if there are any
features that are not typical of type 1 diabetes.

What causes type 1 diabetes?


The cause of diabetes is complex and not fully understood. We do know that diabetes
occurs because of a combination of a person’s genes and some things in the
environment. If a person who has inherited the tendency to develop diabetes comes
in contact with a trigger in the environment, then diabetes may develop.
The triggers are poorly understood, but may be common things in our environment
which are harmless to most people; for example, common viruses or things that we
eat. The trigger may be different for different people.
If diabetes is triggered, the body’s immune system which normally protects us from
infections, begins to attack the beta cells of the pancreas. The immune system seems
to have been tricked into thinking that the beta cells are foreign to the body and starts
to destroy them, causing a decrease in insulin production. It can take from a few
weeks to a few years for all of the beta cells to be destroyed. Type 1 diabetes is an
example of an autoimmune condition.
The pancreas has many beta cells to spare, so symptoms of diabetes do not occur until
more than 90 per cent of the cells have been destroyed. This means it is difficult to
tell if someone is developing diabetes (i.e., it is difficult to tell they are in the
prediabetes phase) until the symptoms of diabetes occur. Special blood tests can
detect people in the prediabetes phase and are being used for research and diabetes
prevention trials. At this stage there is no treatment proven to stop diabetes
developing.

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2: The pancreas, insulin and diabetes
It is important to remember the following points:
• Diabetes cannot be caught from another person. It is not contagious.
• Type 1 diabetes is not caused by eating too much sugar or any other foods.
• There is nothing you could have done to prevent your child from getting diabetes.
It was something that was going to happen anyway.
• Your child cannot grow out of type 1 diabetes. It does not change to type 2
diabetes as they get older.

What are the symptoms and signs of diabetes?


When diabetes develops, glucose levels rise above normal, often as much as five to
ten times normal. Excess glucose spills over into the urine, drawing water with it and
causing excessive passing of urine and dehydration. Thirst increases as the body tries
to compensate and the young person may drink large amounts of fluid.
Weight loss is common over weeks to months since the body cannot use glucose for
energy and instead starts to break down fat and muscle. Excessive tiredness and mood
changes are common because the child is feeling unwell. Breakdown of fat causes
chemicals called ketones to accumulate in the blood and this can cause abdominal
(tummy) pains, nausea and vomiting.

The common symptoms and signs of diabetes are:

u frequent passing of urine


u increased thirst and drinking
u weight loss
u tiredness
u mood changes

Other possible symptoms include:


• oral or vaginal thrush or skin infections
(these organisms thrive in a high glucose environment)
• abdominal (tummy) pains
• decreased school performance because of feeling unwell
• excessive hunger

Caring for diabetes in children and adolescents 5


2: The pancreas, insulin and diabetes

Ketoacidosis
Where the diabetes comes on quickly, or is found late, the child can become very ill.
Glucose and ketone levels become very high in the blood and there is severe
dehydration and loss of salts from the body. This is called diabetic ketoacidosis and
is life-threatening and requires urgent hospital treatment.
The onset of diabetes can be especially rapid in babies and young infants, and
symptoms and signs may be less easily noticed than in older children.

How is diabetes diagnosed?


In most cases the diagnosis of diabetes is simple. If symptoms suggest diabetes, your
doctor will perform a blood test and a urine test (looking for glucose levels and
ketones). Normally the urine contains no glucose; glucose only spills over into the
urine when the blood glucose is high, so glucose in the urine is highly suggestive of
diabetes. A high blood glucose level is used to confirm the diagnosis. In most cases
no other tests are necessary, but occasionally in doubtful cases a diabetes specialist
may recommend other tests, including a more detailed blood test called a glucose
tolerance test (GTT).
If you have a relative or friend with symptoms that sound like diabetes, advise them
to see a doctor without delay and to ask specifically to be tested for diabetes.
Early diagnosis can prevent severe illness with diabetic ketoacidosis.

Can the pancreas recover?


Many treatments have been tried to stop the damage to beta cells in the pancreas,
but at present there is no safe or effective way to do this. This is an active area of
research. When insulin treatment is started, the pancreas is able to rest and recover
to some degree, but not enough to produce all the insulin the body needs. For a time,
the child’s own pancreas may continue to produce up to half or more of the insulin
needed by the body and this period is called the ‘remission phase’ or ‘honeymoon period’.
This can be a period where children require quite small doses of insulin. Unfortunately
the damaging processes in the pancreas are irreversible and continue. Over a period
of time, from a few weeks to many months, the pancreas becomes unable to produce
any insulin and all of the body’s need for it must be met by injection.

How common is diabetes?


Each year in our population about 15 to 25 children per 100 000 develop type 1
diabetes (for children aged less than 15 years). Diabetes can come on at any age in
children, but around 10 to 12 years is most common and it is also quite common
around 4 to 6 years. It is estimated that there are around 7000 children and
adolescents in Australia with type 1 diabetes under 15 years of age. On average, at a
high school there will be one student per 500 with diabetes and in primary schools
about one student per 1200.
Our population has an intermediate incidence of type 1 diabetes compared to other
countries around the world. Incidence is low in Asian populations (a quarter to one
half of our incidence) and highest in Finland (approximately double our incidence).
The differences probably relate to genetic factors. The incidence of type 1 diabetes is
gradually rising around the world and the reasons for this are not clear.

6 Caring for diabetes in children and adolescents


2: The pancreas, insulin and diabetes
What are the risks for other family members?
While inheritance of genes contributes to the risk of diabetes, the risk for other
family members developing diabetes is still generally low. The long-term risk of a
brother or sister developing diabetes (assuming no type 1 diabetes in any other close
family members) is about 3-6 per cent. In an identical twin the risk is much higher,
at least 35-50 per cent. If there is more than one person with type 1 diabetes in the
immediate family, risks for other children will be higher.
For parents with diabetes, if the mother has diabetes the risk for a child is 1-3 per
cent, but if the father has diabetes the risk is 4-8 per cent. If both parents have type
1 diabetes the risk for a child is 10-25 per cent. Remember that diabetes is not
contagious – the risk relates to genetic factors.
If there are other autoimmune conditions in close family members (for example,
autoimmune thyroid disease or coeliac disease), diabetes risk may be greater than the
figures quoted above.

Associated video resource for this chapter


Diabetes Type 1 and Insulin Production

Etsuko Uno and Drew Berry, Walter and Eliza Hall


Institute of Medical Research, 2009
This animation illustrates how insulin is normally produced in the body
and how its production is affected in type 1 diabetes
www.wehi.edu.au/wehi-tv/dna/index.html

Caring for diabetes in children and adolescents 7


2: The pancreas, insulin and diabetes

Common questions and answers

Why does insulin have to be given by injection or pump?


? Why can’t it be given in tablets?
Current insulin preparations cannot be given by mouth because the
insulin is destroyed by the acid in the stomach. Researchers are working
to develop insulin-like medications that can be taken by mouth.
The tablets that some older people with type 2 diabetes take are not
insulin tablets and do not work in children with diabetes. Other ways of
giving insulin are actively being researched.

Should we have our other children tested for risk of diabetes?


? Many people worry about the increase in risk of other children in the
family getting diabetes. Blood testing is available to look for diabetes
antibodies and higher risk genes and this is an active area of research.
One problem at present is that if a high risk of diabetes is found in
another child, there are no proven treatments to prevent it. There are
continuing studies on possible preventions. Your doctor and other
diabetes team members will be able to give you the latest information on
diabetes screening and prevention trials.

?
Why is the cause of diabetes still not fully worked out?
We know that diabetes is caused by a combination of genetic factors and
factors in the environment. Both of these are very complex.
The genetic risk seems to relate to a complex combination of many
genes, rather than just a few. Some of the factors in the environment that
may trigger diabetes have been suggested, but how these may trigger
diabetes is still not fully understood.

Can I decrease the risk of diabetes in my other children?


? No factors have been clearly proven to alter diabetes risk, although some
studies are in progress. Discuss the latest information with your diabetes
specialist.

Will my child be able to come off insulin later in life?


? No. Type 1 diabetes requires life-long insulin therapy. Not until a cure is
found will it be possible for people with type 1 diabetes to stop insulin
treatment.

8 Caring for diabetes in children and adolescents


3: What to expect at the time of diagnosis
Chapter 3 W
 hat to expect at the time
of diagnosis

Key Points
u T
 he diabetes team includes your child and family, a diabetes doctor,
diabetes educator, diabetes dietitian and social worker or
psychologist
u Your child will start feeling well again soon after starting insulin
u L
 earning about diabetes and starting to come to terms with the
diagnosis are your most important tasks during the first few weeks

The diabetes team


Diabetes is a condition which is best cared for by a team. The team members interact
closely, but all have their special areas. Your child and family are an important part
of the team that help look after the diabetes. At the hospital and clinic, you will meet
the health professionals who make up the rest of the diabetes team:
• A diabetes doctor, who is a specialist in the medical care of diabetes in children Chapter
and adolescents. In hospital, young doctors in training (called residents, registrars
and fellows) work with the diabetes specialist.
• A diabetes educator (or nurse educator), whose main role is to teach your child
3
and family all about diabetes and how to care for it now and in the future.
• A diabetes dietitian, who focuses on food and nutrition.
• A diabetes social worker or psychologist, who helps families cope with the
diagnosis of diabetes and the impact it has on their lives. Where there are other
psychological stresses for which people need help, other professionals assist the
team, such as a psychologist or psychiatrist.
• The hospital ward and outpatient nursing staff, who care for your child at the
hospital and help with teaching.
All of these health professionals provide education, counselling and advice at the
time of diagnosis and in the subsequent months and years. The team help you start
to come to terms with the shock of the diagnosis and help you learn how to cope.
The aim of diabetes education is to give your child and family the knowledge and
skills to be self-reliant in the care of diabetes.
Diabetes requires frequent adjustment of treatment for different situations and with
growth and development. The diabetes team continue to help you with this at
follow-up visits and by telephone if there are concerns between visits. As children
mature, they gradually gain more knowledge and take on more responsibility for their
diabetes. They are helped by education at clinic visits, educational updates for
families and activities such as diabetes camps.

Remember that your child and family are an important part of the diabetes team.

Caring for diabetes in children and adolescents 9


3: What to expect at the time of diagnosis

The aim of the whole team is to help keep the diabetes well controlled so that it can
be kept in the background of your lives. We want to keep your child
well-adjusted, happy, healthy and safe. We also like to work in close cooperation with
your family doctor (GP) and other people who may be involved in your child’s care
such as the local paediatrician or other local health professionals – these people are
also often part of the primary diabetes team.

What happens at diagnosis


When your child is first diagnosed with diabetes, the most important things are:
• to start insulin treatment under medical supervision so that blood glucose levels
can be lowered safely and appropriately
• to give your child and family support while you are coming to terms with what
has happened
• to give your child and family time to learn about the management of diabetes,
with the close support of the diabetes team.
There are different approaches to the first week, depending on the preference of your
diabetes centre or hospital and your child’s particular circumstances. In some cases,
children will be admitted to hospital initially, while others will have all of their care
as outpatients. In general, the aim is to have the child in hospital for the shortest
time possible. Regardless of the local approach, management principles will be
similar and a good outcome will be expected. Your diabetes team will guide you and
explain what they feel is the best approach for your child and family.

Outpatient stabilisation
Some children are not admitted to the hospital at all. This is called outpatient
stabilisation or a diabetes day care program. Evidence indicates that stabilisation of
diabetes can be safely achieved without admission to hospital with no disadvantages
and with potential benefits for some. Diabetes centres that do this have set up
outpatient programs and staff and have criteria for when outpatient stabilisation
is suitable.
Where outpatient stabilisation is possible, your child may only spend a few hours or
one night in hospital. During this time your child will be assessed, you will learn
some very basic things about diabetes care and insulin treatment will be started.

10 Caring for diabetes in children and adolescents


3: What to expect at the time of diagnosis
Arrangements will be made for you to come back to the diabetes centre each day for
several days for a program of education and stabilisation and then for more sessions
over the next few weeks. Nursing staff will assist with the first few insulin injections
until you have acquired those skills. During the first few days, families will spend a
number of hours (up to 8 hours or so) at the diabetes centre but then will be able to
go home with their child at night. This has the advantages of avoiding overnight stays
in hospital and minimising disruption to the family. At all times, families can phone
the hospital if any concerns arise.

Hospital admission
Some hospitals prefer a program where the child is admitted to hospital for a short
time and then completes later education as an outpatient.
Children with newly diagnosed diabetes will always be admitted to hospital if:
• they are quite sick initially with diabetic ketoacidosis or other illness
• the family lives too far away to travel to the hospital each day
• the child is very young (usually less than two years old)
• there are difficulties with language or the family has other special needs
• there are other reasons that the diabetes team feel need a stay in hospital
The aim is always to keep the hospital admission to the minimum time possible and
continue further education and stabilisation out of hospital. With children,
it is best for a parent to stay at the hospital if possible during this time.

Caring for diabetes in children and adolescents 11


3: What to expect at the time of diagnosis

3: What to expect at the time of diagnosis


Other things that happen in the first week
Children with diabetes will generally be feeling well within a few days of starting
insulin treatment. A diagnosis of diabetes is understandably a major shock to the
child and the family and it takes some time to come to terms with this. It is important
to reassure your child that she or he will become well and remain well. Often in the
first 24 to 48 hours everyone in the family is feeling shocked and totally exhausted,
so trying to get some rest is important.
Whether or not your child is admitted to hospital, the first week will be busy with
education sessions and learning activities. The diabetes team will try to arrange
specific times for educational sessions to allow families to fit this into their
schedules. Parents should try to be available as much as possible to concentrate on
education and be with their child as much as they can during this difficult time.
Arranging some time off work may be necessary and a letter can be provided to your
employer to help with this. Sessions can sometimes be fitted in around work or are
possible on weekends in some centres.
Also during the first few days, families are advised about the equipment they will
need at home for diabetes management and arrangements are made for these to be
obtained. Some families may qualify for special allowances or a health care card and
arrangements are made to apply for these.
At first, the diagnosis of diabetes and all the things you need to know about diabetes
may seem overwhelming. By the end of the first week, families will be starting to feel
more confident to care for the diabetes. There will always be ongoing support and
guidance from the diabetes team.

12 Caring for diabetes in children and adolescents


3: What to expect at the time of diagnosis
Common questions and answers

?
I believe in the past that all children with newly diagnosed
diabetes stayed in hospital for for up to a week or more.
Why is this no longer so?
There is now quite a bit of evidence that the same outcome can be
achieved with a shorter stay in hospital or without staying in hospital at
all. Different hospitals and diabetes centres have different approaches,
some preferring a stay in hospital and others preferring all outpatient
management. We can’t say that one approach is better than the other;
both will have a good outcome. Your diabetes team will advise what the
local preference is and what they think is best for your child.

I was worried when the hospital said my child did not need to
? be admitted and we went home after the first insulin injection,
to return the next morning. What if something happens at
home?
The diabetes team carefully selects which children are suited for
outpatient stabilisation. Families are briefed in the basic skills and given
clear and simple advice. If they are at all worried they have direct
telephone access to the diabetes team.

Can we see our family doctor for follow-up of our child’s


? diabetes?
Your family doctor is very important in your child’s overall health care;
however you must also have regular visits to your diabetes team.
International recommendations and best practice are that children with
diabetes should be seen at least 3 or 4 times each year by a team
with specialised knowledge and experience in children’s diabetes.
The diabetes team keeps in touch with your family doctor so that he or
she is fully informed about the diabetes. Your family doctor’s role in the
diabetes management is to develop a care plan (so you have access to all
the services your child needs), manage vaccinations, minor illnesses,
travel needs etc. As well as your regular visits to your diabetes team,
you should see your family doctor regularly about the diabetes care plan.
If you don’t see your family doctor regularly it is difficult for them to
help you when you need them.

Caring for diabetes in children and adolescents 13


4: Coping with Diabetes

Chapter 4 Coping with Diabetes

Key Points
u There will be many different feelings to cope with about diabetes
u D
 iabetes can be stressful for the whole family, but things should
settle down over time
u T
 he social worker or psychologist is a member of the diabetes team
who can help with these issues
u T
 he diabetes team will help ensure that you are accessing any
support services or financial assistance that you may qualify for

Coping with the diagnosis – first feelings


The period just after you find out your child has diabetes is likely to be a very
unsettled time for the whole family. At this difficult time your usual ways of coping
with things are disturbed and you are likely to feel vulnerable and confused.
You may have a whole range of feelings. These include:
• Shock: You may have a feeling of unreality. You feel you are operating on
‘automatic’ and that the news hasn’t hit you yet.
• Denial: The news feels so overwhelming that you simply can’t believe it.
You think that there has been a mistake; for example, the test results have
been mixed up. Children can also be in denial and can express this by trying
to avoid injections or finger pricks.
• A nger: You wish there was someone to blame. You may find yourself being angry
with the doctor, nurses, your partner or other family members. You may ask ‘why
me, why my child?’ People sometimes question their faith or feel that life has dealt
them an unfair blow.
• Sadness or depression: There is always loss involved. It is the loss of the fully
healthy child. With any loss, mourning occurs and can continue on and off for
some time. Your mood can range from feeling sad to feeling quite depressed.
• Fear: You may be flooded by fears for your child. You worry about your child’s
survival, the impact of diabetes on his or her life and future goals and ambitions.
Much of the fear is that of the unknown. As you learn about diabetes and put
your new skills into practice, some of these fears begin to fade.
• Guilt: As a parent you want to protect your child from hurt and harm. You may
find yourself thinking about the last few weeks and wondering if you could have
done something differently. There is nothing you could have done to prevent your
child from getting diabetes. Sometimes brothers and sisters may have feelings of
guilt also and it is important to address these.
Children can feel guilty too. Sometimes they feel like diabetes is a punishment for
something they have done wrong. We know from child developmental milestones
that children are egocentric; therefore they think that the world revolves around
them. If something bad happens they tend to blame themselves. Constant
reassurance that they are not to blame can help and talking to their social worker
or psychologist can also help them to explore these thoughts.

14 Caring for diabetes in children and adolescents


4: Coping with Diabetes
If there is diabetes in the family you may worry about having passed it on to your
child. Talk to your doctor so that you understand the role of family factors and
clear up any worries.

How to cope
Keep in mind that this difficult time will pass and you will regain your feeling of Chapter
balance. The feelings of shock and confusion will subside. What helps most is talking
through your feelings with family, friends and members of the team treating your
child. A social worker (or psychologist) on the diabetes team is specially trained
4
to help you understand your reactions and make sense of your family’s experience.
You don’t have to feel that you are not coping to need their help. Asking for help is
one way of coping.
You need to recognise that you are in a vulnerable state and so be mindful of your
own needs. This can mean putting aside some time just for you. If you are feeling
overwhelmed by the amount of information you have to take in, talk to the people
teaching you. They will understand that you may need to go slowly because of how
you feel. Don’t be afraid to ask about something again if you don’t understand the
first time.

Children’s feelings
Your child may experience any or all of the feelings already described. Like you, they
need someone to talk to. You are the best person to help them through this difficult
time because you know them so well.
Don’t be alarmed if your child starts acting like a much younger child. For example,
a four-year-old may ask for a bottle or a toddler may go back to crawling instead of
walking. This ‘regression’ is a normal reaction to stress and sickness and is only
temporary. Your child needs a lot of support and attention.
Older children may need encouragement to share their feelings. You can help by
acknowledging your own feelings: ‘I’ve felt pretty mad (or sad) at times about you
getting diabetes, I wonder how you feel?’. This sort of statement gives the child
permission to express feelings that they might be struggling with themselves.

Caring for diabetes in children and adolescents 15


4: Coping with Diabetes

It is important that a young person’s identity does not become defined by diabetes.
It can be tempting to ask your child what their blood glucose levels are as soon as they
walk through the door after school. Children do not want to identify themselves as a
‘diabetic’ with nothing else to offer or share. Try asking about other things first, like
how their day went, to assist building your relationship and communication.
Adolescents especially have been known to say that the only thing they talk and argue
about with their parents is the diabetes.
It is important to find ways of communicating about the diabetes without having
diabetes being dominant. One method is “to actively help” with the diabetes cares,
rather than just ask if something has been done. This helps in a number of ways;
you know what is happening with the diabetes (and don’t have to ask), it gives moral
support and prevents problems such as errors with insulin doses.

Family relationships
A crisis puts stress on family and close relationships. You may find yourself being
irritable and flaring up easily. Remember that you are all under stress and these
reactions are part of the situation.
Sometimes partners or other family members feel ‘out of step’ with their reactions to
the diagnosis. One is very tearful and wants to talk about things. The other becomes
practical and wants to ‘get on with it’ and not dwell on the sadness or other feelings.
These are different ways of coping with the same situation. Accepting each other’s
differences can help people to still support each other.

Brothers and sisters


Brothers and sisters of the child with diabetes also need to have their feelings
understood. They need to know what is going on and be given a simple explanation
of diabetes. Some may fear that they too will get diabetes or some other illness.
Some may feel guilty that they did not get the diabetes or wonder if recent fights or
conflict caused their brother or sister to become ill. They may feel that their needs
are being neglected because of the attention that diabetes demands. They need
support and reassurance also.

Coping after the diagnosis


After the period around the diagnosis, there are many issues that will arise and new
hurdles to face. Children may feel different from their friends and feel their life is
ruled by diabetes and routines. They may be reluctant to let people know they have
diabetes or be embarrassed to test blood glucose or eat when needed. They may
become more dependent on their parents at a time when they would otherwise be

16 Caring for diabetes in children and adolescents


4: Coping with Diabetes
becoming more independent. Your child may also worry about the extra demands
their diabetes places on the family and may worry about the possibility of long-term
complications.
Parents’ concerns often include fear of low blood glucose levels and grappling
with day-to-day management issues and blood glucose levels. They may worry about
long-term complications and that they are not doing a good enough job with the
diabetes. Parents also worry about how much responsibility they should let their child
have for the diabetes and when to start handing over more responsibility in the
teenage years. There may be a tendency to be over-protective. Sometimes it is
frustrating that others do not understand the amount of work involved in looking
after someone with diabetes and having to re-explain the condition to the child’s
new teachers, friends and others.
Each family will face a different set of challenges, although many of the issues
will be similar. Families usually find their own ways of dealing with these. It is good
for you to try to develop an approach where diabetes management is regarded as
important, but can mostly be put in the background while you get on with life.
The responsibility for day-to-day diabetes care ideally
needs to be shared with a partner or another close
person. To share the practical tasks is to share the
emotional burden. ‘Time out’ for mothers and
fathers (especially those of infants and toddlers) is
essential. The support of family and friends is very
valuable and you need to try to encourage this.
This means giving basic education about diabetes
management to a range of people. If more detailed
education is needed for other family members or
friends, your diabetes team can help arrange this.
It is important not to feel that you are carrying the
weight of the world yourself. For adolescents,
remember that they carry a significant responsibility
and it is important that you find ways of helping with
this responsibility without making them feel that you
are trying to run their lives or control them.
Most diabetes centres arrange for discussion about all of these issues through the
social worker or psychologist with the team. This is especially important at the time
of diagnosis, but also later. Sometimes situations can arise where aspects of diabetes
are too much for your child or family to cope with at the time. This is especially where
the social worker or psychologist from the diabetes team can help.
You should not feel reluctant to ask for help in these situations, as the diabetes team
fully understand the difficulties that can occur. The assistance of a social worker or
psychologist can also be accessed through your family doctor if needed,
as part of their involvement in your care plan.
Mixing with other children and families can also often be very helpful – you learn
how others face the similar challenges and ways they have found to deal with them.
Local Diabetes organisations or your diabetes health professionals can put you in
touch with other families, or you may meet them at education days, parent support
groups and other functions. Diabetes camps can be a way for your child to meet
others their own age with diabetes and to begin to become more independent and
self-reliant in a carefully supervised environment.
After the initial learning phase, it is important to maintain the momentum with all
aspects of the diabetes routines. The “novelty” of the new routines wears off quickly
and often young people hit a difficult patch some weeks to months after the diagnosis

Caring for diabetes in children and adolescents 17


4: Coping with Diabetes

as they come to the realisation that diabetes is a long-term condition with continuing
daily demands. Parents and caregivers need to be on the lookout for faltering
routines, such as insulin omission, less blood glucose monitoring or false recording.
They need to give close support to children and teenagers of all ages and be prepared
to take over control of diabetes routines again if needed for a time.
The short and long-term complications of poorly controlled diabetes can be severe
and life-threatening, so there is no place for complacency. Your diabetes team will
discuss such issues with you and help you formulate your approach if you are facing
such problems.

Financial assistance
Because of the extra care and costs associated with a child with diabetes, there are
avenues for extra financial assistance. Eligibility changes from time to time and may
vary in different states. Your diabetes team will advise which allowances it may be
possible to apply for. In Australia, latest details can also be obtained from Centrelink,
and local diabetes organisations.

Health Care Card and Carer’s Allowance


You will need to apply for a Health Care Card
from Centrelink. This can be continued to young
adulthood if the young person is still studying or
not yet financially independent. The Health Care
Card allows prescription items to be purchased at
much lower prices and concessions for other
medical services.
Some families may also qualify for a fortnightly
payment called a Carer’s Allowance. This is
considered by Centrelink on an individual basis
and is more likely to be approved for those who
are under 10 years or with additional health
problems or disabilities. Your diabetes team will
advise about the latest details which can change
from time to time.

National Diabetic Services Scheme (NDSS)


This government-sponsored national scheme subsidises the cost of diabetes supplies,
such as test strips, lancets, insulin pump supplies etc. Syringes and needles are
available free of charge.
A registration form is required which must be signed by your child’s diabetes team
and forwarded to the NDSS. Supplies can then be bought at cheaper rates through
Diabetes Australia, any NDSS approved pharmacy or some hospitals. Not all
pharmacies are in the NDSS scheme – Diabetes Australia can provide a list.

Others
Other financial subsidies exist for pension card holders and others with special
circumstances. The diabetes team social worker will be able to tell you about all of
these. If you have any special questions or concerns about subsidies, benefits or
financial matters, the diabetes team social worker or local diabetes organisations
can help.

18 Caring for diabetes in children and adolescents


4: Coping with Diabetes
Common questions and answers

?
We were surprised when we were asked to see the social worker
at the hospital because we didn’t think we had those types of
problems. Why was this?
Diabetes has a major impact on the child and the family and it is
important to talk with someone about this. The social worker in the
diabetes team meets with all families and their children to help them
explore the social impacts on the family system and find ways to deal
with these.

My wife and I have not had a night out with just the two of us
? since our daughter developed diabetes. What should we do?
It is important to have some support from close family and friends where
possible. Often a relative or close friend will be happy to have some
diabetes education so they can look after your daughter sometimes.
Resources such as this will help, and education sessions can be arranged
through your diabetes educator if needed. Some time-out from diabetes
is important for parents.

Since our two-year-old developed diabetes, we have been


? worried about the effect on the behaviour of our five-year-old.
What can we do?
The two-year-old will need a lot of attention, but it is also important to
find time to do things as a family, and special time for one or both
parents to have with your other children. Brothers and sisters can
sometimes worry a lot about things such as the possibility that their
brother or sister may die, they themselves may get diabetes or that they
caused the diabetes. Reassurance is needed, and the social worker or
psychologist can help with these common concerns.

My 10 year old is very capable and independent. When can I let


? her do all her diabetes cares by herself?
Even once children and teenagers are capable in many aspects of diabetes
self-care, evidence shows that it is very important for parents or caregivers
to remain closely and actively involved in supervising and assisting with
the daily care. While the level of assistance will be different than for
younger children, your continued involvement shows your support and
guidance and allows you to know that the diabetes is being appropriately
managed. Try to be actively involved rather than being seen to “check-up
on” or “nag” about routines. The consequences of poor diabetes control
are so serious that this role is an important responsibility of parents.

Caring for diabetes in children and adolescents 19


5: Insulin Treatment

Chapter 5 Insulin Treatment

Key Points
Key points for diabetes management are:
u Insulin therapy: Is required to replace the insulin that the body cannot
make. Insulin has to be given by injection or insulin pump into the fat
layer under the skin (subcutaneous). It cannot be given by tablets,
since digestion destroys the insulin. Other ways of giving insulin could
be possible in the future
u A
 food plan: A healthy food plan and a regular intake of carbohydrates
are required to balance with the insulin that is given by injection or
insulin pump
u E
 xercise: Exercise and being active are part of a healthy lifestyle. It is
important to understand how exercise affects diabetes
u M
 onitoring: Regular and frequent blood glucose monitoring is
essential and ketone monitoring when needed
u E
 ducation and knowledge: There is a lot to learn about diabetes to
maintain good control. This learning is an ongoing process
u Regular follow-up with the diabetes team

Managing diabetes
The management of diabetes is a balance between factors which lower blood glucose
(mainly insulin and exercise) and those which raise blood glucose (mainly food and
stress hormones). This is illustrated in the following diagram. Managing diabetes is
all about understanding these factors and learning to make adjustments for them.
Details of all of these aspects are given in later sections.
 
 


 
 






Factors that must be balanced in diabetes management

20 Caring for diabetes in children and adolescents


5: Insulin Treatment
Different types of insulin
A variety of insulin types are available and these can be used in different patterns
of injections. Insulin can also be delivered by an insulin pump (see chapter 18).
Available insulins differ in their profile of action – that is, how quickly they start to
act, when the maximum effect is and how long the effect lasts. The profile of action
is determined by how quickly the insulin breaks down into single molecules and is
absorbed from under the skin and also binding with carrier proteins. Your diabetes
team will discuss with you what they feel is best for your child at the time of diagnosis.
Later on it may be necessary to change insulin types or the pattern of injections or
use an insulin pump, as different things suit different children at different ages and
stages of development.
Before the 1980s, all insulin was extracted from the pancreases of pigs (porcine
insulin) and beef cattle (bovine insulin). In the 1980s it became possible to make
human insulin synthetically in the laboratory and human insulins are the preferred
treatment in most children and adolescents. These are identical to natural insulin
and are highly pure. Beef insulins are occasionally used in some patients with special
circumstances.
Recently a number of chemically modified insulins have become available called
insulin analogues. These have been designed to have better properties which improve
the diabetes management in many people. We are likely to see more specially tailored
insulin types become available over the next few years. The availability of different
insulins gives your doctor a wider choice of insulins to match your child’s needs at
any particular time.
Insulin is given in one of two ways:
• Injections: most children have an injection routine that uses a combination of
Chapter
rapid or short acting insulin and long acting insulin. Injections are usually given
2, 3 or 4 times per day. The table on page 23 summarises the different types of
insulin in common use. Some books use the term ‘intermediate acting’ insulin. 5
Here we include these insulins in our long acting insulin category as this is the
terminology in common use.
• Insulin pumps: only rapid acting insulin is used in pumps (i.e., no long acting
insulin). An insulin pump delivers insulin continuously in small amounts
(basal insulin) with bursts of insulin (called boluses) activated by the user to cover
meals and correct high glucose levels.

Insulin types used in Australia


The table later in this section lists types of insulin available in Australia and gives a
guide to their characteristics. All insulins are synthetic human insulins or human
insulin analogues, except where “beef” is shown. The timing characteristics of the
insulins shown are a guide only – there is much variation between different children,
at different doses and different ages and you may find they work differently in your
child. Your diabetes team will decide which insulins are best for your child and
discuss this with you.

Rapid and short acting insulins


These are insulins that are absorbed quickly into the body after the injection and are
used as part of the insulin plan for most children and adolescents. Rapid acting
insulins are also used in insulin pumps which deliver insulin continuously.

Caring for diabetes in children and adolescents 21


5: Insulin Treatment

The rapid acting insulins in this category (Humalog, NovoRapid, Apidra) have
been designed to be absorbed more quickly than the original short acting or
regular human insulins (Actrapid, Humulin R). Rapid acting insulins have the
convenience of being able to be given immediately before a meal. They may cause less
hypoglycaemia in some people because of their shorter duration of action.
On the other hand, rapid acting insulins do not suit all people well as they may
be too sensitive to the rapid onset of action or the insulin action may not last
long enough.

Long acting insulins


These have a slower onset and a longer duration of action and are also known as basal
insulins. Most people on insulin injections have these once or twice a day as part of
their insulin plan. These insulins have characteristics that slow their rate of absorption
and action. The most recent additions to the range of long acting insulins have been
the insulin analogues glargine (Lantus) and insulin detemir (Levemir). These newer
analogues offer significant advantages and are now in widespread use, although have
not completely replaced long acting human insulins. People receiving their insulin
through an insulin pump do not use any long acting insulin, but need to have some
available at home in case of pump malfunction (see Chapter 18).

Beef insulins
Beef insulins are now rarely used. They tend to have a slower onset of action and a
less obvious peak than human insulins. Occasionally beef insulins may be
recommended if your doctor feels it would help an unstable pattern for which other
adjustments have not worked. They are likely to be less available over time.

Pre-mixed insulins
Pre-mixed combinations of rapid or short acting and long acting insulins are available
but are not used frequently in children and adolescents. This is mainly because the
ratios of the two types of insulin often need to be changed in children and this
cannot be done when they are pre-mixed. There are some situations where they can
suit young people or are the best compromise and your diabetes team will discuss this
with you if needed. An increasing range of pre-mixed insulins may become available
as new chemically altered insulins are developed.

Different patterns of insulin dosage


Ideally, the insulin doses given would mimic the levels produced by a normally
functioning pancreas. That is, a small background level of insulin (basal insulin)
with pulses of insulin action at times of meals or snacks, as shown in the figure.

Pancreas secretes bursts


of insulin to cover meals

Basal insulin

22 Caring for diabetes in children and adolescents


5: Insulin Treatment
Onset of Peak of Duration
Insulin Type Preparations and manufacturer action action of action

Rapid acting
NovoRapid (insulin aspart, 15-30 1-2 3-5
insulin
Novo Nordisk) minutes hours hours
analogues

Humalog
(insulin lispro, Eli Lilly)

Apidra (insulin glulisine,


Sanofi-Aventis)

Short acting Actrapid (regular human insulin, 30-60 2-4 5-8


insulins Novo Nordisk) minutes hours hours

Humulin R (regular human insulin,


Eli Lilly)

Hypurin Neutral (regular beef


insulin, Aspen)

Long acting Protaphane (human isophane 2–3 4-12 8-24


insulins insulin, Novo Nordisk) hours hours hours

Humulin NPH (human


isophane insulin, Eli Lilly)

Hypurin Isophane
(beef isophane insulin, Aspen)

Long acting Levemir (insulin detemir, No 20-24


1-2
insulin Novo Nordisk) pronounced
hours hours
analogues peak

Lantus (insulin glargine, 2-4 Relatively 20-24


Sanofi Aventis) hours peakless hours

Mixed Rapid / long acting mix 30 4-12 8-24


insulins NovoMix30 (Novo Nordisk) minutes hours hours
Humalog Mix25 (Eli Lilly)
Humalog Mix50 (Eli Lilly)

Short / long acting mix


Mixtard 30/70 (Novo Nordisk)
Mixtard 50/50 (Novo Nordisk)
Humulin 30/70 (Eli Lilly)

Caring for diabetes in children and adolescents 23


5: Insulin Treatment

With injections, we aim to approximate the body’s requirements by using a


combination of rapid or short and longer acting insulins. Usually injections are given
two, three or four times per day. The closest way at present to simulate the pancreas’
normal secretion pattern is to use a continuous insulin pump (see section 18).
The following describes some commonly used patterns of insulin injections.
Recent trends in management have seen more children and adolescents receiving
3 or 4 insulin injections per day or using insulin pumps. Your diabetes team will
advise on the most appropriate insulin plan to start with and for subsequent
treatment. The initial plan could change later, depending on how well it works, your
child’s age and other variables.

Four times daily injections – basal-bolus or multiple daily injections (MDI)


In this routine, people have:
• Before breakfast: rapid or short acting insulin (meal bolus)
• Before lunch: rapid or short acting insulin (meal bolus)
• Before main evening meal: rapid or short acting insulin (meal bolus)
• Once or twice daily (before breakfast and/or bedtime): long acting insulin
(basal insulin)
This routine is often referred to as a basal-bolus injection plan or multiple daily
injections (MDI). Commonly about 40 to 45% of the insulin is given as long acting
insulin and the rest is divided up in the rapid or short acting doses. This offers very
good flexibility for insulin adjustment and when part of a comprehensive diabetes
management plan has been shown to have advantages for diabetes control. It is the
commonest starting insulin plan for older children, adolescents and adults. It is also
commonly used in younger children, although they will need assistance with
injections, particularly at school.
There are different ways of applying and adjusting this insulin pattern which can be
summarized as:
1. Conventional MDI with consistent carbohydrate intake
In this pattern, a person has a fairly consistent carbohydrate intake on a day to
day basis and tends to keep the pre-meal insulin doses fairly constant from day
to day.
2. Flexible carbohydrate and insulin adjustment
In this method, pre-meal insulin doses are adjusted from day to day based on
variations in carbohydrate intake and activity patterns. There is no exact formula
for how this is done. It is based on a person’s experience and judgement of how
food and activity affect their BGLs and involves making small increases or
decreases from their usual doses according to the circumstances of the day.
3. Insulin to carbohydrate ratio
This is a further extension of flexible day to day adjustment in which the pre-meal
insulin dose is calculated according to the amount of carbohydrate that will be
eaten using a formula.
All of these methods can be applied well and which one is used is often a matter
of the recommendations of your diabetes team and your personal preference.
These methods are further discussed in chapters 6 and 12.

24 Caring for diabetes in children and adolescents


5: Insulin Treatment
Figure showing a basal-bolus or MDI injection pattern

Two or Three times daily injections


In some children and adolescents, a two or three times per day injection plan may
be recommended. This may depend on factors such as age, ability to give injections
(e.g., at school) and motivation. These simpler injection plans can work well for
certain periods, but ultimately the aim for most children and adolescents is to move
to a multiple daily injection plan (see above) or insulin pump as they become older.
This can usually occur by the age of 9 or 10 years and is generally achievable by the
time children reach high school.
A variety of 2 and 3 times per day injection plans can be used. Different plans will
suit different children and your diabetes team will advise what they think is best at
any time in consultation with you and your child. These injection plans usually
involve long acting insulin being given either before breakfast or before bed, or
sometimes both, and rapid or short acting insulin being given before breakfast
and at afternoon tea or dinner. Your diabetes team will explain the details.

Short acting insulin


Long acting insulin

Insulin Insulin Insulin Insulin


injection injection injection injection




Br Lu Af Di Be Mi Br
ea nc ter nn dti d e
kfa h no er me nigh (nex akfa
st on t t d st
tea ay)

Figure showing an example of a 3 times per day injection pattern with injections
at breakfast, afternoon tea and bed

Caring for diabetes in children and adolescents 25


5: Insulin Treatment

Other patterns of insulin dosage via injection


Many other patterns of insulin dosage may be used, depending on individual needs.
Those described above are in most common use. It is common in the honeymoon or
remission phase (in the first months after diagnosis) that less rapid or short acting
insulin is needed, sometimes none at all for a time. As times goes on however, this
will again be needed.

Insulin pump therapy


Insulin therapy in type 1 diabetes is
increasingly being given by insulin pump
therapy. With an insulin pump, a small
computerised insulin pump delivers
insulin continuously via a small plastic
cannula that is inserted under the skin
and changed every 3 days. The user or a
carer activates the pump to give insulin to
cover meals or to correct the blood
glucose level. Insulin pumps use rapid
acting insulin only. Patients using an
insulin pump do not have to give insulin
injections, except in special circumstances.
Pump users still need to regularly monitor
blood glucose levels.
Insulin pumps are an option for most children and adolescents with type 1 diabetes.
Your diabetes team will discuss suitability and timing of pump therapy for your child.
After the diagnosis of diabetes, it is common for children to be on injection
therapy for a time and then progress later to insulin pump therapy if that is agreed to
be appropriate. However, insulin pump therapy can be started at any time.
Insulin pumps are covered in detail in chapter 18.

What is the right pattern and dose of insulin for


my child?
The doses, type and timing of insulin injections or whether an insulin pump is used
are individually decided for each child. The appropriate doses of insulin are those
which keep the blood glucose levels and the overall diabetes control in the desirable
range. This varies greatly between individuals depending on body size, duration of
diabetes, types of insulin being used, puberty, food intake and exercise.

Here is a general guide to total daily insulin needs in children and adolescents:
• In the honeymoon or remission phase: 0.2 to 0.5 unit of insulin for every kg of
body weight per day.
• Children beyond the honeymoon phase: 0.7 to 1.2 unit of insulin for every kg of
body weight per day.
• Adolescents: May require much larger doses, up to 1.5 units or more of insulin
for every kg of body weight per day.
For example, Kristine is a 10 year old girl who weighs 36kg. Her usual insulin doses
are approximately 6 units of Apidra before each main meal and 14 units of Lantus
pre-bed. The total insulin per day is approximately 32 units which is 0.9 units/kg/
day, within normal expectations.

26 Caring for diabetes in children and adolescents


5: Insulin Treatment
Devices for insulin injections
Insulin has to be given by injection or pump infusion into the fatty layer under the
skin (subcutaneous layer). Insulin can be given by:
• Injection with an insulin pen, or
• Injection with an insulin syringe, or
• Continuous infusion using an insulin pump (see chapter 18)

Insulin pens
Insulin pens are devices that are pre-filled with insulin or are loaded with pre-filled
cartridges. Current pens hold 300 units of insulin which allows for multiple doses of
insulin to be given before the cartridge or pen needs changing. At injection time, the
dose of insulin is dialled up on the pen and administered. Pens cannot mix different
types of insulin together, so if more than one type of insulin is needed at the same
time of day, more than one pen injection is needed. Alternatively, some insulin types
can be mixed together in syringes (see below). One type of pen can be adjusted in half
unit steps which is often useful for toddlers and young children.
All major insulin manufacturers have pen devices available for their insulins. Needle
lengths of 12.7 mm, 8 mm, 6mm, 5 mm and 4mm are available for pens. Generally
8 mm needles are most suitable for children and young people; 4, 5 or 6 mm needles
are too short for some people to get the dose of insulin beneath the skin layers
properly, but may be recommended for some very lean people

Insulin syringes
Insulin pens are generally preferred and most convenient for giving injections;
however syringes will deliver insulin perfectly well and can be used if preferred or if
pens are not available. They are available in various sizes (25, 30 50 and 100 units)
depending on the dose required and are available with two different length needles
(12.7 mm and 8 mm).

Caring for diabetes in children and adolescents 27


5: Insulin Treatment

Your educator will advise if syringes are appropriate and which syringe is best for
your child. In general, the smallest syringe that will hold the required dose is best
for accuracy and 8 mm needles are generally more suitable for small children and
infants.
Insulin syringes are disposable and made for single use only. Syringes, pens or insulin
vials must never be shared with another person because of the risk of spreading
serious diseases such as hepatitis or HIV.

Automatic injection devices


Automatic injection devices are available for some types of pens and for syringes.
These may be useful for children who have a particular fear of needles or in helping
children to give their own injections.
For syringes, these are devices into which the syringe can be loaded, the needle is
hidden from view and when a button is pressed the needle is automatically inserted
into the skin. Some models also press the plunger to inject the insulin. Your diabetes
team can discuss with you if these may be helpful for your child.

Needless devices (jet injectors):


Jet injectors are devices which have no needles and force insulin under the skin with
air pressure. The injection is not painless and they are generally not recommended
because the insulin absorption is unpredictable, they are expensive and can cause
more injection site problems. They are rarely used nowadays and are mentioned here
for completeness.

How to give an insulin injection


Checking the insulin before injecting
The vial, cartridge or insulin pen should be checked for:
• The expiry date.
• The date you opened or started the insulin cartridge or bottle (write this on
insulin bottles when you open them), since any opened insulin vial or cartridge
should only be used for a maximum of 4 weeks, then discarded .
• The name – are you giving the correct amount of the right insulin? Different
insulin types have colour coded cartridges, but if your insulin pens look similar,
mark them clearly so you can easily tell them apart
• The appearance: different insulins may have a different appearance in the vial
or pen.
Clear insulins:
Many insulins have a clear appearance (like water) whether they are long, short or
rapid acting. If your insulins should be clear, do not use any vial or pen that is cloudy,
discoloured or otherwise altered from the usual appearance.
Cloudy insulins:
Some particular long acting and mixed insulins have a cloudy appearance in the vial
(e.g., Protaphane, Humulin R, Mixtard). These types of insulin need to be mixed well
before use (see below). Do not use a vial or pen if the insulin is flaky, clumped,
discoloured or cannot be mixed properly.

28 Caring for diabetes in children and adolescents


5: Insulin Treatment
Giving an injection with a pen
This will become an easy and routine procedure after a while, but the steps are listed
here to help with learning. You will be taught how to load and use your particular
brand of pen by the diabetes team.
1. Wash hands.
2. Check that you have the correct insulin pen (have your pens clearly marked) and
that there is enough insulin remaining in the cartridge for the current injection.
It is preferable to use a new needle for each injection.
3. If giving a cloudy long-acting or mixed insulin, be sure to mix the insulin well by
inverting the pen 10 to 20 times. The cartridge contains a glass ball which mixes
the insulin. Do not shake the pen as this will damage the insulin. Clear insulins
do not need to be mixed.
4. Prime the pen (get rid of any air bubbles). Dial up a 2 to 4 unit dose and, holding
the pen vertically, inject into the air to expel air bubbles (air shot) and to prime
the pen. The pen is primed if drops of insulin without bubbles are coming from
the needle. If not, keep repeating this procedure until a bubble-free stream of
insulin is achieved with the air shot.
5. Dial up the required dose.
6. Select the injection site.
7. Steady the skin by taking a small pinch of skin with the index finger and thumb
at the chosen site. The pinch needs to be at least to the depth of the needle.
This is especially important in lean people, otherwise the injection may go too
deep into the muscle layer and hurt more and the insulin will act differently.
People who are not lean may not need to do a pinch, especially if using short
needles (4, 5 or 6mm), but only use a no-pinch technique if advised by your
diabetes team.
8. Insert the needle straight into the pinched-up skin (i.e., at 90 degrees) to its full
depth and push the pen button slowly all the way down to push in the insulin.
In very lean individuals, injecting at a 45 degree angle to the skin may be necessary
to avoid the injection going too deep.
9. Leave the needle in for 5-10 seconds, then gradually let go of the skin and
pull out the needle.
10. Remove the needle from the pen after injection and dispose of in an approved
sharps container.

Caring for diabetes in children and adolescents 29


5: Insulin Treatment

How to draw up a mixed dose of insulin from penfill cartridges

1. Wash hands.

2. Check that you have the correct insulin types.


You will be drawing up the rapid or
short-acting insulin first

3. If your long-acting insulin is “cloudy” insulin,


mix by tipping the cartridge up and down ten
to 20 times.
Do not shake the cartridge as this damages the
insulin. Clear insulin does not need to be mixed.

4. Open a new syringe. Make sure there is no air


in the syringe by first pushing the plunger
right down. Insert the needle into the
cartridge of rapid or short-acting insulin.
Pull back the plunger of the syringe to draw up
the dose of insulin required plus an extra 2 units
which allows you room to get rid of any air
bubbles. The rubber stopper in the cartridge will
gradually move down as you draw out the insulin
and equalise the pressure.

5. R
 emove the syringe from the bottle, hold it
vertically and push the plunger gently to get
rid of any air bubbles and any extra insulin to
obtain the correct dose. It may help to tap the
side of the syringe to remove all air bubbles.

6. Insert the needle into the cartridge of long-


acting insulin and turn it upside down. Pull
back the plunger to obtain the correct dose.
If you draw back too much, you will have to
discard the whole syringe and start again.
Do not push any insulin into the cartridge.
7. Now you are ready to inject the insulin

If you still need to draw up insulin from vials (bottles) the procedure is similar,
except air has to be injected into the bottles before starting to avoid problems
with suction and airlocks in the bottles.

30 Caring for diabetes in children and adolescents


5: Insulin Treatment
Mixing insulins in a syringe
If more than one insulin type is being given at the same time, sometimes these can
be mixed together in one syringe and given as one injection. Not all insulins can be
mixed since the action characteristics may be altered; your diabetes team will advise
with your particular insulins. Manufacturers advise that the basal insulin analogues
Lantus and Levemir should not be mixed with any other insulin.
It is important not to cross-contaminate the insulin vials when doing this. It is
particularly important not to accidentally get long acting insulin into your rapid or
short acting insulin vial, since this will diminish the rapid or short acting insulin
effect. If you always do it the same way then there is less chance of a mistake.
The recommendation is that the rapid or short acting insulin is always drawn
up first into the syringe.
Insulin can be drawn up from pen cartridges (3 ml) or 10 ml bottles (also called vials).
Obviously pen cartridges are designed to be used in pens, but insulin can also be
drawn up easily and conveniently from them using syringes. In general,
we now recommend using penfill cartridges when using syringes because the
drawing-up technique is simpler.

Giving an injection with a syringe


To give an injection with a syringe:
1. Draw up insulin as described in the diagram on page 30.
2. Take a small pinch of skin with the index finger and thumb. The pinch needs to
be at least to the depth of the needle. This is especially important in lean people,
otherwise the injection may go too deep into the muscle layer and hurt more and
the insulin will act differently.
3. Insert the needle straight into the pinched up skin (i.e., at 90 degrees) to its full
length and push the plunger slowly all the way down to push in the insulin. In
very lean individuals, injecting at a 45 degree angle to the skin may be necessary
to avoid the injection going too deep.
4. Leave the needle in for about 5-10 seconds, then gradually let go of the skin and
pull out the needle.
5. Dispose of the syringe in an approved sharps container.

Injection sites
The injection sites recommended are away from large blood vessels or nerves to avoid
excessive bleeding or nerve damage. These areas include the abdomen (tummy) and
waistline, the front and outsides of the thighs and the upper outer part of the
buttocks. Some people also use the arms but this is a less commonly recommended
site.
The abdomen (tummy) is the preferred site of injection because insulin is absorbed
more quickly and uniformly from the abdomen. Also the abdomen is less affected by
exercise than other sites. Many children have all of their injections in the abdomen,
and by moving around all the available areas on the abdomen, problems of lumps
(lipohypertrophy) can be avoided. Some people on multiple injections have injections
in the abdomen, except for the pre-bed long acting dose which they have in the thigh
to get a slower overnight absorption. If using different sites, it is preferable to use the
same site at the same time of day (e.g., morning injection in tummy, evening injection
in buttocks).

Caring for diabetes in children and adolescents 31


5: Insulin Treatment

In general, insulin absoprtion is quickest from the abdomen, followed by the arms,
buttocks and thighs. The rate of insulin absorption can be speeded up by exercising
muscles – thigh and arm muscles are most affected by this, so you should be careful
about injections at these sites before exercise.
Injections in the arms are generally not recommended, especially in small children
who have only a thin layer of fatty tissue beneath the skin here. It is easy for the
insulin injection to go too deep and end up in the muscle and be absorbed too fast.
However, some diabetes centres may recommend that arms be used at certain times
– discuss with your educator.


Recommended site for insulin injections

Once you have decided with your diabetes team on the best place for injections for
your child, it can be a good idea to use a poster and reward chart to guide this at
home, especially for young children. One example is if injections are given regularly
in the abdomen (tummy), draw a picture of a child with different sections of the
tummy marked with the days of the week. This can help you remember to rotate the
sites each day. Too little rotation of injection sites is one of the main problems seen
with insulin injections.
Injections are given into the fatty layer under the skin, but they should not go deeper
into the muscle layer as this tends to speed up the absorption of the insulin. Standard
technique is to take a small pinch of skin and give the injection at a
90 degree angle to the skin (i.e., straight in). 8mm needles are recommended for most
children and adolescents, especially those who are lean. If the longer 12.7mm needles
are used (or in very lean individuals even with short needles), injection at a 45 degree
angle may be needed to avoid the insulin going too deep and into muscle.
People who are not lean may not need to do a pinch, especially if using short needles
(4, 5, or 6mm), but only use a no-pinch technique if advised by your diabetes team.

32 Caring for diabetes in children and adolescents


5: Insulin Treatment
Disposal of syringes and pen needles
Used syringes and pen needles should be
placed in an approved sharps container
which needs to be kept out of reach of
children. These can be obtained from
wherever you get your diabetes supplies
(chemist, Diabetes Australia or hospital).
When full, these sharps containers need
to be properly disposed of. Unfortunately,
uniform arrangements for sharps disposal
do not exist across Australia. Check first
with your local council about their sharps
disposal arrangements. If satisfactory
arrangements do not exist then your
chemist or hospital will usually be able to
dispose of them for you. Do not place
syringes or pen needles in anything other
than an approved sharps container.

Needles, syringes, pens, insulin cartridges and insulin bottles should


never be shared with others because of the possible risk of contamination
and spread of infection.

Insulin storage
Bottles and cartridges (penfills) of insulin not currently being used are stored in the
refrigerator between 2 and 8 degrees C until their date of expiry. They usually have a
long storage life under these conditions. If they freeze accidentally they must be
thrown away.
The insulin bottle or cartridge that has been opened for current use is generally
kept at room temperature, since injections are more comfortable if the insulin is not
cold (except hot climates, see below). Opened insulin bottles or pens can be stored
in a cool dark place out of the fridge for 4 weeks. Insulin should be discarded after
this time since it may not be as effective. In hot climates however, it is advisable to
keep all insulin refrigerated including that in current use; allowing 15 to 20 minutes
for it to come up toward room temperature may make the injection more comfortable.
Insulin that gets over-heated (e.g., left in a hot car) will lose its effectiveness and
should be discarded. Vigorous shaking damages insulin and should be avoided.
If you think that your insulin is not working well, perhaps related to storage
conditions, discard it and use a new cartridge.
Remember to always have at least one spare bottle of each type of insulin on hand
in case of accidental breakage.

How long to wait between the insulin injection


and eating
Most insulin injections are given before a meal or snack. For rapid acting insulins
(Humalog, Novorapid, Apidra), the child should eat within 15 minutes of the
injection or pump bolus, otherwise hypoglycaemia is likely. For children on these
insulins it is important that the meal is ready and available before the insulin
is given.

Caring for diabetes in children and adolescents 33


5: Insulin Treatment

With short acting insulins (Actrapid, Humulin R), waiting 20-30 minutes is generally
recommended after the injection to allow the insulin to start being absorbed. When
short acting insulin is given at afternoon-tea time or at lunch time at school, waiting
is often not practical so we generally recommend no waiting period for injections at
these times.
If the blood glucose level has been trending low just before the injection, waiting is
also not recommended. If the blood glucose level has been high, then waiting at least
20-30 minutes or longer (if this is practical) can help the blood glucose levels. Bear
in mind that these guidelines are not rigid but should be followed if they fit into the
daily routine.

Common injection problems and how to


avoid them
Leaking of insulin after the injection
If this occurs regularly, try:
• Holding the skin with a more gentle pinch
• injecting more slowly and slowly counting longer before pulling out the needle

Slight bleeding and a small bruise


This will occur sometimes because the needle goes through a small blood vessel.
It is nothing to worry about and does not stop the insulin from working properly.
Avoid injecting into any obvious skin blood vessels (which look like fine blue lines
beneath the skin).

Painful injections
Insulin injections should cause minimal discomfort with modern fine needles.
Make sure that a new needle or syringe is being used each time, because needles start
to blunt after 1 injection. Injections can be more painful if cold insulin is being
injected. If your insulin has been in the refrigerator, try to remember to take it out of
the fridge 15-20 minutes before you want to inject.
If the injection is not being given deeply enough, the insulin may split the deeper
layers of the skin, causing pain. If the insulin is being given too deeply, it may go into
the muscle layer which can also cause pain.
Some children who are used to only having injections in one area will complain that
injections are more painful when they move sites. Often this is a psychological
phenomenon and may be avoided by getting children used to using various sites and
areas from the start.

34 Caring for diabetes in children and adolescents


5: Insulin Treatment
Fatty lumps around the site of injection (lipohypertrophy)
This is a common problem when insulin is
repeatedly given into the same sites, either by
injection or pump. These lumps don’t look
good, and more importantly, insulin absorption
from these sites is likely to be variable and
incomplete. These lumps can be prevented by
moving the location of the injection within the
same site daily (e.g., moving to a completely
different part of the tummy each day) and
varying pump sites as widely as possible.
If present, these lumpy areas usually go away
after several weeks of avoiding giving insulin in
that area.

Hot temperature and insulin absorption


The absorption of insulin in some people may be quicker in very hot weather,
especially the rapid or short-acting insulin. Some children need less insulin on
hot days. Monitoring the blood glucose levels helps you work this out for your child.
Insulin absorption and action may also be more rapid if you take a hot
bath or shower just after taking insulin, so be careful of this.

Mistakes with insulin doses


It is important to be concentrating and unhurried at insulin injection or bolus times,
but occasionally a mistake will occur with an insulin dose. Provided the mistake is
recognised, appropriate adjustments are usually easily made. If you are not sure how
to compensate, or it is a major mistake, contact your educator, diabetes doctor or
hospital for advice without delay.
Errors in insulin doses can be dealt with by thinking about which type of insulin has
been given in too large or too small a dose and how long the insulin will act.
• If the mistake has been to give too much insulin, test the blood glucose more
frequently and give extra carbohydrate.
• If the mistake has been to give too little insulin, test the blood glucose more
frequently and compensate with extra small doses of rapid or short acting insulin.
A common example of a mistake with a person on injections is giving the morning
dose of insulin in the evening. This sometimes means that a much larger dose than
needed has been given in the evening and hypoglycemia is a risk. Deal with this by
feeding extra carbohydrate and testing the blood glucose every 2 hours during the
evening and overnight. Set your alarm to make sure you wake up to check the blood
glucose level. As a guide, it is necessary to eat nearly the same amount of carbohydrate
overnight as during a usual daytime.

Caring for diabetes in children and adolescents 35


5: Insulin Treatment

Common questions and answers

Why are different children on different insulin types?


? Insulin treatment has to be tailored for the individual child. Different
insulin types suit different children, and this may depend on the age,
how long they have had diabetes, their eating and activity pattern and
other factors. Sometimes your child may need to change insulin types.
Your diabetes team will work out what suits your child best at any time.

My child’s insulin doses keep having to be put up. Does this


? mean his diabetes is getting worse?
No. Doses have to increase as children grow and this is normal. They also
increase when the honeymoon period is over, and increase quite a lot
during the teenage years.

How does the diabetes team decide how many injections per
? day my child needs?
This is an individual decision for your child and may change with age
and duration of diabetes. There is increasing use of multiple daily
injection plans or insulin pumps, since these are recognized to have
advantages for long-term diabetes control, reduction of complications
and lifestyle flexibility. Your diabetes team will discuss these issues with
you and your child.

Are insulin pens better than syringes?


? Both pens and syringes give a dose of insulin just as well, but pens tend
to be quicker and more convenient. Younger children on mixed
injections may use syringes, as it decreases the number of injections
required per day.

My child has fatty lumps at the injection sites — is this a


? problem?
Yes. This is called lipohypertrophy, and is caused by giving too many
injections in the one place or putting pump sets in the same area
repeatedly. It does not look good and also causes unreliable absorption
of insulin. It goes away if these sites are rested. It is prevented by changing
the point of injection or pump set as often as possible.

36 Caring for diabetes in children and adolescents


5: Insulin Treatment
Should I move to a completely different injection site every day?

? Insulin is absorbed differently from different areas of the body. The


abdomen (tummy) is the best injection site and many use this for all
injections, but some children prefer to use other areas. It is best to give
the injection at the same time of the day into the same area (e.g.,
morning injection always into tummy, but moving around that area).

My 13-year-old daughter wants to give her injection through her

? clothes when she goes out so as not to be embarrassed by


lifting up her clothing. Will this cause problems?
Although this is not the best practice and cannot be generally
recommended, it is better to have the injection through the clothes than
to avoid it because of embarrassment. A number of studies have shown
no harm from injecting insulin through clean clothing.

I have heard that some people use different types of short


? acting insulin at different times of day (e.g., short acting insulin
(Actrapid or Humulin R) at breakfast and rapid acting insulin
(NovoRapid or Humalog or Apidra) at dinner. Also I have heard
of people who have long acting, short acting and rapid acting
insulin all together at the same time. Please explain?
As a wider range of insulins have become available, diabetes specialists
have tried to customise insulin types and patterns to better suit an
individual’s requirements and gain improved control. Thus, variations
from traditional insulin patterns are increasingly used. This requires
detailed knowledge of insulin characteristics and should only be done on
the recommendation of your diabetes team. As more new insulins
become available, more variations in insulin patterns are likely to
be seen.

Caring for diabetes in children and adolescents 37


6: Food and healthy eating

Chapter 6 Food and healthy eating

Key Points
Key points for diabetes management are:
u C
 hildren with diabetes need a normal, healthy food plan as is
appropriate for the whole family
u L
 earn about healthy eating and encourage them to eat a wide variety
of foods
u C
 ontrolling blood glucose levels is a balance between the carbohydrate
foods that we eat, insulin doses and activity
u U
 nderstanding the effect of the amount and type of carbohydrate on
BGLs is important in achieving good diabetes control
u D
 ifferent carbohydrate foods affect blood glucose levels differently
– the glycaemic index describes this. Try to include some low
glycaemic index food in each meal and snack
u L
 imit the amount of food containing sugar, but some sugar in food is
a normal part of a balanced diet
u Limit the intake of fats, particularly saturated fats
u Reading food labels helps you work out what to eat
u H
 ealthy eating and an active lifestyle will help maintain a healthy
weight

Introduction
The food plan (or nutritional plan) for diabetes is really just a healthy way of eating
and it is good for the whole family.
This section is all about food and diabetes. Your dietitian will go through all of this
information with you to ensure you develop a good understanding of the food plan
for diabetes. The healthy eating plan that is promoted for diabetes is basically the
same that is promoted for all children. Throughout this section you will learn how
easy it is to choose and eat good food. The rewards for following a healthy eating plan
will be that your child will feel fit and healthy and will grow and develop normally.

The Australian dietary guidelines for children


The Australian dietary guidelines for children (from the National Health and
Medical Research Council) are great for all people to follow, including children
and adolescents with diabetes. They can be summarised as follows:
• Enjoy a wide variety of nutritious foods
• Eat plenty of vegetables, legumes and fruit

38 Caring for diabetes in children and adolescents


6: Food and healthy eating
• Eat plenty of cereals (including breads, rice, pasta and noodles),
preferably wholegrain
• Include lean meat, fish, poultry and/or alternatives
• Include milks, yoghurts, cheese and/or alternatives
• Reduced fat milks are not suitable for children under 2 years, but reduced
fat varieties should be encouraged for older children and adolescents
• Choose water as a drink
• Alcohol is not recommended for children and adolescents
• Limit saturated fat and moderate total fat intake; low fat diets are not suitable
for infants
• Consume only moderate amounts of sugars and foods containing added sugars
• Choose foods low in salt
• Children and adolescents need sufficient nutritious foods to grow and develop
normally. Growth should be checked regularly
• Physical activity is important for all children and adolescents
• Encourage and support breastfeeding
• Prepare and store food safely

Components of food
Food comes in a variety of shapes, sizes and colours and has many different tastes
and textures. Most foods are made up of a combination of nutrients. A basic
understanding of the different nutrients that are contained in the food we enjoy
eating is important. Chapter

The main nutrients in food are: 6


• C arbohydrates: Carbohydrates are the most important source of energy for the
body. Out of all the nutrients, only carbohydrates directly affect blood glucose
levels. The amount and type of carbohydrate eaten are both very important.
Examples of carbohydrate-containing foods are bread, pasta and milk.
• Proteins: Proteins are important building blocks in the body and are essential for
normal growth and repair of body tissues. Examples of protein-containing foods
are meat, fish and eggs.
• Fats: Fats and oils are also essential for growth and development and are an
important source of energy. A certain amount is essential for good health but too
much or the wrong type becomes unhealthy.

Other nutrients and components of food include:


• V itamins and minerals: These are important for the normal functioning of many
body processes. The best way to have a balanced vitamin and mineral intake is
through a healthy variety of foods, especially fruit and vegetables.
• Fibre: An adequate intake of fibre is important for bowel health and is believed
to have a number of long-term health benefits.
• Water: Water is the most common component of the body. Drinking plenty of
fluids is important for general health. Your child should drink more if it is hot
and if they are more active or have high blood glucose levels. Water is the
healthiest fluid of all to drink.

Caring for diabetes in children and adolescents 39


6: Food and healthy eating

The healthy living pyramid


The healthy living pyramid provides a basic guide to healthy eating for all people.
It emphasises the type of foods that we should eat most, those that we should eat
moderately and those that should only be eaten in smaller amounts. It also
emphasizes the importance of physical activity. This advice applies to all children and
adolescents, whether or not they have diabetes.

40 Caring for diabetes in children and adolescents


6: Food and healthy eating
Carbohydrate
Carbohydrate or ‘carbs’ are energy foods. During digestion, carbohydrates are broken
down into glucose and are absorbed into the blood. Blood glucose is the fuel for our
body just as petrol is the fuel for a car. Blood glucose levels go up and down
throughout the day. They rise after eating carbohydrate and fall as we use the glucose
in our blood for energy.
In people without diabetes, blood glucose levels are closely controlled by insulin
produced by the pancreas in response to the food they eat. In people with diabetes
the amount and type of carbohydrate eaten is balanced with the amount of insulin
given. It is important to eat regular meals throughout the day and know how much
carbohydrate they contain to keep the blood glucose levels in balance.
The insulin plan for your child will usually be selected based on your child’s usual
eating patterns and the amount of carbohydrate eaten. Most children (including
infants and toddlers) will require three main meals and three snacks
per day.
Teenagers or adults may have more flexible eating patterns. It is important to discuss
the insulin and food plans with your dietitian to ensure that they work well together.

Carbohydrate: when, how much and what type?


Understanding these questions is an important part of the diabetes food plan.
The main points are:
1. Spread of carbohydrate: The intake of carbohydrate foods should be spread
across the day. For most children this will be divided into three meals (breakfast,
lunch and dinner) and two or three smaller snacks (morning tea afternoon tea
and sometimes supper) at fairly regular times each day. This is appropriate for all
children, whether they have diabetes or not.
2. Amount of carbohydrate: Regulation of the amount of carbohydrate eaten is
important for good results with any insulin plan. Using a simple system to count
carbohydrates such as exchanges or serves can be a useful guide.
Different insulin plans will have different flexibility with meal times and
carbohydrate quantity and your dietitian will discuss this individually.
3. Type of carbohydrate: Think about the type of carbohydrate. Different
carbohydrates have different effects on blood glucose levels. This concept is called
the ‘glycaemic index’ of food. It is important to include low glycaemic foods as
these may assist with blood glucose control.

When to eat
A normal eating pattern is to spread carbohydrate intake across the day in regular
meals and this is important for diabetes management. The aim is to have the insulin
action (from injections or pump) matching the carbohydrate intake to keep the blood
glucose levels within target as much as possible. Depending on the insulin plan,
going too long without carbohydrate during the day may result in the blood glucose
level dropping too low.
Overnight when your child sleeps and is not eating, the blood glucose level is
maintained because of the carbohydrate eaten before bed, less activity, less insulin
acting overnight and ongoing glucose output from the liver. Some children require a
snack before bed (supper) to help maintain the blood glucose level overnight –
include some low GI food such as milk. However, newer insulin plans and insulin
pumps mean that supper may be optional for some children – check this with your
diabetes team.

Caring for diabetes in children and adolescents 41


6: Food and healthy eating

42 Caring for diabetes in children and adolescents


6: Food and healthy eating
Your dietitian will usually advise that your child have three main meals each day
(breakfast, lunch and dinner) and two or three snacks (morning tea, afternoon tea
and sometimes supper). Some insulin plans and insulin pumps allow some flexibility
in the timing of meals and snacks and your diabetes team will discuss
this with you.
Some teenagers and young adults, especially those on rapid-acting insulins or insulin
pumps, may require little or no between-meal snacks. Your diabetes team will advise
about individual circumstances.

How much to eat


The aim is to eat an amount of carbohydrate that suits healthy nutritional demands,
as for any child. In general, children’s metabolism is best suited to having a fairly
similar intake of carbohydrate each day, which is spread across the day in a similar
way.
The current recommendations are that all children and adolescents with type 1
diabetes should count or quantify carbohydrates and this is especially important for
those using adjustable insulin plans (insulin pumps or multiple daily injections).
There will always be some variation in carbohydrate intake from day to day, depending
on appetite, activity levels and other factors. As long as the variation is not large,
blood glucose levels should remain satisfactory.
Two systems are in common use to help guide the amount of carbohydrate to be
eaten at each meal.

1. Counting carbohydrate in exchanges or grams

Counting carbohydrate exchanges is a simple system to help estimate the amount of


carbohydrate in different foods, with the aim of helping matching insulin doses to
carbohydrate intake.

One exchange of a carbohydrate food is the amount that contains


approximately 15 grams of carbohydrate.

Remember that an exchange of carbohydrate does not refer to the total weight of
the food, but the amount of that food that contains 15 g of carbohydrate.
For example, the following common foods all contain about one exchange
(15 grams) of carbohydrate:
• one slice of bread
• one medium banana
• 250 ml of milk
• one medium potato
• one large orange
• 1/3 cup cooked rice
• 1/3 cup cooked pasta

Caring for diabetes in children and adolescents 43


6: Food and healthy eating

Your dietitian will suggest an approximate number of carbohydrate exchanges for


each of your child’s meals or snacks and you can then choose from a variety of
carbohydrate containing foods to make this up. For example, a teenager may have
3 to 4 exchanges of carbs for breakfast whereas a toddler may have 1 or 2.
In flexible insulin plans and insulin pumps, there is more flexibility and the
insulin dose is directly based on the amount of carbohydrate that the person chooses
to eat.
Your dietitian will introduce you to resources that give information about about how
much carbohydrate is in various foods and how much of that food is one exchange
(15 grams) of carbohydrate. On packaged foods, the nutrition information panel is
the best way to get information on carbohydrate quantity. The carbohydrate content
of the food is shown in grams and this allows you to work out the approximate
number of exchanges.

2. The serves system

This is another type of system that can be used to ensure appropriate carbohydrate
distribution over the day for patients on insulin injection plans, although is not
suitable for those using insulin pumps. It is not based on a specific quantity of
carbohydrate but rather an individual’s preferred serving size. Therefore a serve of a
particular food is likely to be different for different children and at different ages.
This does not matter, as long as you remain consistent. However, in practical terms,
one serve is often fairly close to one exchange of carbohydrate.
The number of serves of carbohydrate that your child eats at each meal or snack
should be based on their usual intake, activity level and appetite and may vary a little
from day to day. Your dietitian will suggest an approximate number of serves for
each of your child’s meals and snacks (e.g., three to four serves for breakfast) and you
can then choose from a variety of carbohydrate-containing foods to make this up.
When choosing the foods, you would also think about the type of carbohydrate and
choose at least one low GI food at every meal and snack.
A typical serving size may correspond to a slice of bread, a glass of milk or juice,
one piece of fruit or simply the amount that fits into the palm of the child’s hand
(usually 10-20 grams of carbohydrate). The key is to be consistent with serving sizes
of particular foods from day to day.
Serves and exchanges are often similar, but not always the same. It is best to get used
to one system or another and then follow that. The system that you follow may
depend on the local preference in your diabetes centre, who will provide you with
further information. Remember that both systems can work well.

Carbohydrate counting is important for diabetes management


Carbohydrate for meals and snacks should be counted in:
grams, or
exchanges (one exchange equals approximately 15 grams of carbohydrate),
or serves.

Using carbohydrate counting in the diabetes management plan


The above sections have talked about the importance of carbohydrate counting and
how this helps to match insulin doses to the amount of carbohydrate that is eaten.
This is also discussed in chapter 12 on Insulin adjustment.

44 Caring for diabetes in children and adolescents


6: Food and healthy eating
Carbohydrate counting can be used in a number of different ways in meal planning.
Your diabetes team will teach you one of these methods, depending on your child’s
age, insulin plan, eating pattern and other needs. This may change over time.
Don’t worry if other people you know are using a different plan.

1. Consistent carbohydrate intake


In this method, the aim is to have a food plan in which there are consistent
amounts of carbohydrate intake for the meals and snacks each day.
For example, a child may always like about 3 exchanges of carbohydrate for
breakfast, 2 exchanges for morning tea etc. The type of foods can be varied
by understanding carbohydrate exchanges. The insulin pattern is designed to
match this consistent intake of carbohydrate from day to day.
This method suits people who find they have a fairly consistent intake of
carbohydrate from day to day.

2. Flexible carbohydrate and insulin adjustment


In this method, the person with diabetes has an understanding of their usual
carbohydrate intake, which they count using exchanges, and their usual insulin
doses and activity. They also recognise how their blood glucose levels respond
to variation in carbohydrate intake, activity patterns and insulin doses. They
learn to adjust insulin doses, especially pre-meal doses, if needed to account for
this variation in carbohydrate intake and other factors with the aim of achieving
blood glucose targets.
For example, a child who usually has 7 units of NovoRapid to cover their usual
breakfast will increase that dose by 1 or 2 units if they are hungry and eat a bit
extra.

3. Insulin to carbohydrate ratio


This is another level of carbohydrate counting. In this method, the person has
a formula for how much insulin is needed to cover 1 exchange of carbohydrate
(15 grams of carbohydrate) and they calculate the dose according to how much
they are going to eat at a meal. They can also make a correction for high or low
blood glucose and activity.
For example, a teenager might have 2 units of rapid insulin per exchange
(15 g) of carbohydrate before each meal. Therefore if he eats 3 exchanges he
will have 6 units; if he eats 4 exchanges he will have 8 units.
All these methods rely on counting of carbohydrates which you and your child will
become more skilled at. However, children and families require regular updates to
remain skilled at carb counting. Your diabetes team will advise which form of
applying carbohydrate counting is recommended and your preferences will be
discussed. Diabetes can be managed appropriately with any of these methods,
depending on the individual circumstances.

Type of carbohydrate and the glycaemic index (GI)


Different carbohydrates have different effects on blood glucose levels because of
differences in rates of digestion and absorption. This concept is called the glycaemic
index or GI. Foods with a high GI are quickly digested and absorbed and cause a
rapid and large rise in blood glucose levels. Foods with a low GI are more slowly
digested and absorbed and produce a more gradual rise and fall in blood glucose
levels, which is preferable for children with diabetes. We usually consume a mixture
of low, medium and high glycaemic index foods at meal times. It is important to
know about glycaemic index and try to include at least one low glycaemic index
food in each main meal for your child. This will help achieve more stable blood
glucose levels.

Caring for diabetes in children and adolescents 45


6: Food and healthy eating

Try to include at least one low GI food in each main meal for your child.
When the GI is low, the blood glucose rise is slower and lower.

The glycaemic index is all about understanding the effect of different carbohydrates
on blood glucose levels. There are a number of factors that influence how
carbohydrates are digested, including fibre content, cooking and processing, amount
of fat and protein presence of sugar, type of sugar and type of starch.
Carbohydrate containing foods can be classified as low, intermediate or high GI
according to the known effects on blood glucose levels. Foods are given a ranking
from 0 to 100. A ranking < 55 is a low GI food, 55 to 70 is medium GI and > 70
is a high GI food. Some packaged foods now include a symbol indicating if they
are low GI, but this is not required labelling.
As can be seen in the graph below, the blood glucose rise after eating white bread is
much quicker and higher than when pasta is eaten. White bread is a high glycaemic
index food (GI greater than 70) and pasta is a low glycaemic index food (GI less than
55). Information like this is available for many foods.




 
  


   
Comparison of blood glucose levels after eating white bread or pasta

Low GI foods (GI less than 55)

Good choice low GI carbohydrates include pasta, milk, yoghurt, rolled oats, baked
beans, wholegrain breads, fruit loaf, noodles and spaghetti, sweet potato, apples,
pears, peaches, oranges and grapes. Adding lemon juice or vinegar to a meal
(as a salad dressing) can also help lower the glycaemic index of that meal.
It has also been recognised that low GI foods have an important carry-over effect.
The benefits of a low GI breakfast will carry over and benefit the blood glucose levels
at the next meal. A simple change such as switching to low GI bread and having a low
GI breakfast cereal has been observed to significantly improve blood glucose control
throughout the day.

Intermediate GI foods (GI 55 to 70)

These include basmati rice, crumpets, bananas, wholemeal crispbread, wheat cereal
biscuits, oatmeal, Shredded Wheatmeal biscuits, pineapple and rockmelon.

High GI foods (GI more than 70)

High GI carbohydrates include puffed wheat, white bread, wholemeal bread,


baked potato, mashed potato, calrose rice, waffles, jelly beans, watermelon, cornflakes,
chocolate rice cereal, water crackers and soft drinks and Lucozade. High GI foods
can be included as part of a balanced diet, but it is important to combine them with
lower GI foods when possible.

46 Caring for diabetes in children and adolescents


6: Food and healthy eating
Many parents have already noticed that some types of carbohydrate containing foods
seem to last longer or always produce a more desirable blood sugar level compared to
other foods which seem to be used up before the next meal or snack. This is the
difference between a low GI and a high GI food.
The GI should never be used in isolation when making food choices for your child
with diabetes. The dietary guidelines for children should always be considered when
introducing new foods into your child’s diet. It is also important to think about
where the foods fit in the healthy food pyramid as well as their GI value.
Low GI foods in the eat least section still need to be limited. High GI foods in
the ‘eat most’ section can be included regularly but ideally combined with
low GI choices. Remember that it is usual to eat a varied diet that includes low,
intermediate and high GI foods. If you want to learn more about the GI ask
your dietitian for more information.

Caring for diabetes in children and adolescents 47


6: Food and healthy eating

What about sugar?


Sugar (or sucrose) is a type of carbohydrate. Sugar can be included as part of a
normal healthy diet as long as it is eaten in moderation, especially if included as part
of a meal. Foods containing sugar often do not raise blood glucose levels as high
as some common starchy foods. Using the glycaemic index, sugar itself has a GI of
65 which is intermediate and many sugar-containing foods such as milkshakes and
yoghurts have low GI values. Foods that contain added sugar are often higher in
carbohydrate and fats so it is important to read the nutrition information on the
packet so that you can decide if it is a suitable food and estimate how much to eat.
This will be covered later in this section.

Artificial sweeteners
A number of different artificial sweeteners are available and widely used in
products such as diet soft drinks and cordials and other ‘diet’ or ‘low joule’ products.
These include aspartame (Nutrasweet and Equal), saccharin, sucralose (Splenda),
stevia, isomalt and cyclamates.
Artificial sweeteners have been widely used and are generally believed to be safe if
taken in moderation.
Products such as diet soft drinks and cordials are suitable for people who have
diabetes, since non-diet drinks do result in major elevations of blood glucose levels.
However, remember that water is the healthiest drink for everyone and diet drinks
are best reserved as an occasional item.
Sugar can be included in small quantities as part of a well balanced, low GI diet,
making the use of artificial sweeteners mostly unnecessary. Where sweetening is
required in a mixed food or recipe (containing carbohydrate, protein and fat), sugar
can often be used. This is because in mixed food, the absorption of the sugar is
slowed down by other ingredients.
Products containing the sweeteners isomalt, sorbitol, mannitol, xylitol and maltitol
can have a laxative effect if too much is eaten.

Special diabetic products


The labelling of food can be confusing. Some foods are labelled as ‘suitable for people
with diabetes’ or ‘no added sugar, but they may not be recommended by your
dietitian.
Reasonable choices would be food products labelled as:
• diet or low joule cordials and soft drinks
• diet or low joule jelly
• no-oil salad dressings.
Diabetic confectionary, ice-cream and biscuits are an unnecessary part of the diet and
are not encouraged. These ‘special diabetic foods’ are often expensive, offer no
benefit over the real thing and may contain compounds such as sorbitol which may
have a laxative effect.
Try to avoid:
• diabetic cakes
• carbohydrate-modified ice-cream

48 Caring for diabetes in children and adolescents


6: Food and healthy eating
• diabetic chocolate and lollies
• diet biscuits
• carbohydrate-modified jams and diet jams.

Proteins
Proteins are important building blocks of the body. Proteins play an important role
in growth and repair of body tissue and can also be used as a secondary source of
energy by the body.
Protein foods include meat, chicken, fish, cheese, eggs, nuts, legumes and seeds.
Some protein foods also contain carbohydrate and fat; for example, milk and yoghurt.
Protein foods can be quite high in fat so it is important to eat foods from this group
in moderation as the healthy food pyramid suggests. Choose lower fat options such
as lean meats and low fat dairy foods.

Fats
Fats are an important part of our diet and a certain intake is required for healthy
growth and development. There are different types of fat in foods and we now know
that polyunsaturated fats (vegetable oils), monounsaturated fats (canola and olive
oils) and omega-3 fats (fish oils) are much more healthy than saturated fats.
It is also important to remember that all fats are high in energy, and if too much
fat is eaten, excess weight gain may occur.

Caring for diabetes in children and adolescents 49


6: Food and healthy eating

Why should we eat less saturated fat?


It is important to establish good eating habits from an early age. We know that there
is an increased risk of elevated cholesterol and vascular disease in diabetes. Reducing
saturated fat in the diet is recommended, not only for people with diabetes but for
the general population to reduce the risk of vascular disease. A high intake of
saturated fat is strongly associated with high cholesterol and increased risk of
heart disease.

How can we eat less saturated fat?


The best way to reduce saturated fat in our diet is to reduce the intake of fat from
meat and dairy foods and from fats used for frying and baking. Many children’s snack
foods are high in saturated fat.
Substituting ‘healthier’ fats such as monounsaturates and polyunsaturates will help
to control blood cholesterol levels and reduce the risk of heart disease.
Suggestions:
• Try selecting reduced or low fat dairy products in place of traditional full fat
products. Reduced fat milk is suitable for children over 2 years of age.
• Replace saturated spreads like butter, with monounsaturated and polyunsaturated
spreads and oils.
• Try to select low fat options when buying takeaway and select those that are
cooked with oil low in saturated fat.
• Avoid deep frying. Oven baking or grilling is preferred.
• Trim visible fat from meat. Buy lean cuts of meat and lean mince.
• Try to limit takeaways to once or twice a week.
• Watch out for snack foods which are high in saturated fats (e.g., chips, some
biscuits and savoury biscuits and dip).
• Ask your dietitian about suitable snack foods or read the snack section in
this section.
• Try canola, olive or sunola oils which are high in monounsaturates, but these
may also need to be limited if your child is overweight.
• Avocados and nuts are high in monounsaturates but still need to be limited
to reasonable quantities or excess weight gain may occur.

50 Caring for diabetes in children and adolescents


6: Food and healthy eating
Fibre: make sure your child has enough
Fibre refers to material in food which is generally not absorbed, but is very important
in keeping the bowel and digestive processes in balance. It also helps keep our bodies
healthy by helping to prevent some diseases, keeping our bowels regular and making
us feel full. Fibre is only found in plant foods such as wholegrain and wholemeal
breads and cereals, brown rice, wholemeal pasta, fresh fruit and vegetables, legumes
and pulses (e.g., baked beans and lentils), nuts, bran and dried fruits. Soluble fibre is
linked to reducing cholesterol and other forms of fibre (e.g., resistant starch) are
linked with disease prevention.
How much fibre your child needs each day will depend on their age. It is recommended
that young children (aged 1-8yrs) need 14-18 g/day. Older children should aim for
20-28 g dietary fibre per day. To achieve this, choose high fibre breakfast cereals,
wholegrain bread and a good intake of fruit and vegetables. For packaged foods,
a high fibre choice contains 3 g fibre or more per serve.

Fluids
Having enough fluid intake is part of a balanced healthy eating plan for all people.
The best fluid to drink is water. Fresh fruit and some other foods contribute to daily
fluid intake. Fluids such as milk and juice contain carbohydrate and need to be
counted in your child’s carbohydrate intake. Fruit juices should be limited to no
more than one glass per day and consumed in combination with a mixed meal. Diet
soft drinks and diet cordials can be included in moderation and will not affect blood
glucose levels.
Plenty of fluids are especially important in hot weather and when exercising. During
sick days (see chapter 10), fluid intake is very important, especially if the blood
glucose levels are high (water or other carbohydrate-free fluids). When not feeling
well, carbohydrate-containing fluids are easier to tolerate than normal foods.

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6: Food and healthy eating

‘Free’ foods
Free foods are foods that contain minimal amounts of carbohydrate and fats and do
not affect blood glucose levels when eaten in moderation.

Note: Eating too much of some free foods can affect blood glucose

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6: Food and healthy eating
The following free foods list includes some vegetables, some fruits, beverages,
condiments, spices, flavourings, spreads and sweeteners.
Foods containing protein and fat are not free foods because they are often high in
calories. Meat, chicken, eggs, cheese and fish are protein foods that don’t contain
carbohydrate. These foods contain some fat and are recommended to be eaten in
moderation, not as a free food. Also, some free foods (e.g., soy sauce, Vegemite) are
very high in salt, so large amounts are discouraged.
If your child is asking for free foods regularly, it is likely that their current meal plan
needs increasing to satisfy their appetite and meet their growth requirements – your
dietitian can assist with this. Eating very large amounts of some free foods can affect
blood glucose.
Free foods list
• Vegetables: All vegetables are free except potato, sweet potato, corn, taro, yam and
cassava.
• Fruits: Small amounts of strawberries, lemon and passionfruit.
• Beverages: Broth, tea, coffee, herb tea, low joule or diet cordial and low joule or
diet soft drinks. Limit diet drinks to two glasses per day in general. Coffee and tea
are not recommended for young children.
• Flavourings: Cocoa, coffee, diet toppings, vanilla and other essences.
• Spreads, dressings and seasonings: Vegemite, Promite, Marmite, fruit spreads
or jams (small amount) and fish paste, salad dressings and mayonnaise.
• Seasonings such as herbs and spices, garlic, parsley, mint, mustard, tomato sauce,
tomato puree, vinegar, Worcestershire sauce, stock cubes, soy sauce, pepper and
lemon juice.

Reading food labels


Learning to read food nutrition labels will be of great help in making food choices.
Different products will suit different people, depending on the amount of food they
eat, body weight, blood glucose control, blood cholesterol and the amount and type
of exercise.

Caring for diabetes in children and adolescents 53


6: Food and healthy eating

The two main things to consider when looking at a food label are:
• the total amount of carbohydrate (which includes sugar), and
• the amount and type of fat
There are food labelling standards for Australia and New Zealand that all food
labels need to comply with. Compulsory information includes energy (kilojoules),
protein, total fat, saturated fat, total carbohydrates, sugars and sodium. Total
carbohydrate is shown and, beneath this, the amount of the total carbohydrate that
is made up of sugars. Total fat is shown and, below this, the amount of that fat that
is saturated fat. Remember that foods lower in saturated fats are generally healthier.
Some food packages will display GI information, but this is not compulsory for
food labels. Not all foods have been tested for GI value.

Information to look for


Look at the following information in the nutrition panel:
• Serving size: Compare this with the amount your child will be eating or drinking.
Is your serve size the same as that stated on the package? The serving size is the
average serving size of the product but your child may eat more or less than this
amount.
• Fat: Try to avoid foods high in saturated fat. For snack foods, choose lower fat
products -aim for less than 5 g fat per serve or less than 10 g fat per 100 g.
• Carbohydrate total: The total carbohydrate includes all sugars and starches, both
natural and added. Remember that approximately 15 grams of total carbohydrate
equals one exchange of carbohydrate.
• Sugars: This tells you how much of the total carbohydrate is sugar. This will
include added sugar as well as naturally occurring sugar such as lactose (milk
sugar) and fructose (fruit sugar).
• Ingredients: When the ingredients are listed on a product they are listed in order
of greatest to least quantity by weight. The ingredient which is used most is listed
first and that used least is listed last. If sugar or a type of fat is listed first, this
may not be a good everyday food choice. Look for added fats and sugars!

54 Caring for diabetes in children and adolescents


6: Food and healthy eating
Examples of labels
Here are examples of nutrition labels from two products and a guide to the
information they contain.

Nutrition information – Low fat fruit yoghurt 150g tub


Serving size: 150 g, Servings per tub: 1

Average quantity per Average quantity per 100 g


150 g serving

Energy 589 kJ (140 Cal) 393 kJ (94 Cal)

Protein 6.9 g 4.6 g

Fat: total 2.0 g 1.3 g


saturated 1.2 g 0.8 g

Carbohydrate: total 22.5 g 15.0 g


sugars 21.4 g 14.3 g

Sodium 102 mg 68 mg

Calcium 226 mg 151 mg

Ingredients: Skim milk, milk, sugar, milk solids,


fruit (6%), water, live acidophilus and bifidus
cultures, halal gelatine, thickener, flavours,
acidity regulators.

Nutrition information – Barbecue Shapes – snack biscuits


Serving size: 25 g, Servings per package: 8

Quantity per serving Quantity per 100g

Energy 546 kJ 2184 kJ

Protein 2.6 g 10.2 g

Fat: total 6.3 g 25.2 g


saturated 2.9 g 11.7 g

Carbohydrate: total 15.8 g 63.3 g


sugars 0.4 g 1.4 g

Sodium 188 mg 752 mg


Ingredients: Wheat flour, vegetable oil, tomato
powder, salt, emulsifier, yeast, sugar, parsley, garlic,
glucose, Worcestershire sauce, onion powder, raising
agents, flavours (natural, nature identical), spices,
vegetable extract, flavour enhancer (E260).

Caring for diabetes in children and adolescents 55


6: Food and healthy eating

Questions to ask yourself when reading food labels


This example uses the two food labels above.

1. How much yoghurt is my child going to drink or eat?


Your child will eat 150 g if he or she eats the whole tub. Note that the nutrition
information is given for this serving size and also per 100 g of yoghurt.

2. What is the total carbohydrate in this tub of yoghurt?


There is 22.5 g in the whole tub (150 g), or approximately 1.5 exchanges of
carbohydrate.

3. What about the sugars in the yoghurt?


Sugar is listed as an ingredient and makes up most of the carbohydrate in this
product. This is not a problem, since it is mixed with protein and fat in this
product which will slow its effect on blood glucose levels. Yoghurt is generally a
low GI product (see below).

4. What is the main ingredient in the yoghurt?


Skim milk, since it is listed first in the ingredient list.

5. Is the yoghurt high in fat?


No, it is low in fat and saturated fat. The total fat content is only 1.3 g per 100 g.

6. Does the yoghurt have a low, medium or high glycaemic index (GI)?
This is not shown on the nutrition label. Brief lists of foods and their GIs are
given earlier in this section. In general, dairy products have a low GI. Your
dietitian can give you more information about GI.

7. Are the ‘barbecue shapes’ an appropriate carbohydrate food for everyday


eating?
The shapes do contain carbohydrate. However, they also contain 25.2 g of fat per
100 g (i.e., they are 25.2 % fat). Foods with more than 10 g per 100 g should only
be eaten occasionally and in moderation. About half of the fat in the ‘shapes’ is
a saturated fat which should be kept to a minimum in the diet. The shapes are
also high in sodium (salt). Thus the shapes should be regarded as an occasional
food to be eaten in moderation and not an everyday food.

8. How many of the Barbeque Shapes make up one 15g exchange?


You cannot tell this from this nutrition label. Some nutrition labels might tell
you how many biscuits make up one serving, but not in this case. You could
estimate by knowing that the pack is made up of 8 x 25 g servings, each serving
containing 15.8 g of carbohydrate or about 1 exchange. Alternatively, weighing
reveals that there are approximately 13 biscuits per 25 g of the product or per
exchange of carbohydrate. Weighing and measuring is not always necessary,
but can be a good idea when you are using unfamiliar foods or serving sizes.

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6: Food and healthy eating
Ingredients in disguise
Fats and sugar are sometimes called by other names in ingredient lists. Use the
following lists to see how many different fats and sugars are contained in your
food choices.

Fat is also known as: Sugar is also known as:

• vegetable oil/fat • sucrose


• animal fat/oil • glucose
• shortening • dextrose
• copha • malt
• lard • maltose
• tallow • glucose syrup
• chocolate • corn syrup
• palm oil • molasses
• coconut oil • golden syrup
• milk solids • fruit syrup
• fruit juice concentrate
• honey

Nutrition claims on food labels


Food packaging and advertising use a number of terms to make claims about the
product. Some of these are explained here: they may not always mean what you think.
If in doubt, read the nutrition panel which helps you work it out for yourself.
• Lite or light: May refer to colour (e.g., light olive oil), salt content (e.g., lite chips)
or to fat content. This can be confusing, so check the nutrition panel.
• No added sugar: May still contain fruit sugar (fructose) or milk sugar (lactose).
Check the nutrition panel for the carbohydrate content.
• Cholesterol free or low cholesterol: Cholesterol free does not mean fat free.
Cholesterol is only found in products of animal origin. Avocados, for example,
are cholesterol free but not fat free.
• Low joule: The food or drink has been artificially sweetened, but may still contain
carbohydrate. Check the nutrition panel.
• Diet: Products that have a lower energy content (kilojoules or kJ) than other
similar foods (e.g., diet yoghurt).
• C arbohydrate modified: A sugar alternative such as sorbitol is used.
Check the nutrition panel for carbohydrate and fat content. These foods still
contribute energy to the diet and are not necessarily suitable alternatives.
• Low fat: The food contains less than 3 g of fat per 100 g.
• Reduced fat: The fat content has been reduced but the food may still be high
in fat (e.g., reduced fat cheese). These may still be fine to eat, but consider how
much and how often you eat them.
• No added salt or reduced salt: There has been no salt or less salt (sodium) added
to the food.
• High fibre: The food must contain at least 3 g of fibre per average serve.
• All natural: A very non-specific claim. Read the nutrition label.
• Toasted or oven baked: Check the fat content of these foods. It may still be quite
high.

Caring for diabetes in children and adolescents 57


6: Food and healthy eating

Advice for specific age groups


As children grow and develop, the initial meal plan will require adjustment.
The management of diabetes varies greatly at different ages and stages of development.

Infants and toddlers (under five years)


Breastfeeding is encouraged for infants with diabetes. Breast milk or human milk
substitute formula remains a major nutrient source until one year of age. Solids may
be introduced at four to six months.
Fussy eating, food fads and food refusal are common in toddlers and when these
occur in a child who has diabetes this can cause great anxiety for parents. It is not
unusual for a toddler to eat erratically and be unpredictable, but usually with
persistence and a consistent approach, more regular eating patterns can be are
established.
Young children often wish to eat more frequently than older children, but a diabetes
meal pattern of 3 main meals and 3 snacks each day works well for this. Whereas a
“grazing” style intake was previously recommended for toddlers with diabetes, it is
now recognised that this makes matching insulin to food intake more difficult and
also makes blood glucose interpretation more difficult because the child has usually
just eaten. 3 meals and 3 snacks for toddlers and young children works well and helps
establish good eating patterns.
The meal environment is important in establishing good eating habits in children.
TV, computers and other distractions should be turned off and everyone should
sit at the table for at least 15 minutes, even if not choosing to eat. If a young
child asks for food between meals/snacks, offer water or try distraction techniques,
e.g., reading a book, playing a game. If a young child will not eat at the meal they
should still stay at the table and hopefully will start to eat. If not, they can be
offered something after the meal, although that still needs to be a reasonable
food choice.
As healthy eating habits for life are being established by the whole family, a variety of
food colours, tastes and textures should be promoted. To guard against parents
becoming slaves in the kitchen, toddlers should be given a simple choice between
one food or another rather than asking ‘what would you like to eat?’.

School-age children
Children’s energy needs are constantly increasing with rapid growth and activity.
Energy intake nearly doubles from 6 to 12 years of age. Regular review of meal plans
is therefore essential. Eating patterns tend to be more regular at this age and most
children adapt well to having three main meals and two or three snacks during the
day. School-age children are encouraged to carry ‘hypo food’ and be aware of the
need for extra carbohydrate for exercise. School-age children need to be guided about
choices from the school canteen and fast foods. Also, avoid swapping of food at
lunchtime which is common, since swaps may have different carbohydrate quantities
or be less suitable choices.

Adolescents
Adolescence is a natural period of establishing independence and of rebellion;
diabetic management is one more thing to rebel about. Growth is rapid, lifestyle
is more irregular and there is often more snacking, eating out and fast foods.
The issue of alcohol use may also arise. The desire for independence can cause
resentment of restrictions, particularly if food is the focus.

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6: Food and healthy eating
Adolescents on multiple insulin injections or insulin pumps enjoy the flexibility of
being able to adjust daily routines to match their lifestyle. Accurate counting of
carbohydrate is important in order to take advantage of this flexibility. It is important
that healthy food choices and regular meals are still reinforced. Undesirable practices
such as skipping insulin, over-restricting food intake to reduce weight or episodes of
binge eating are often seen in this age group.

Children’s parties
We all love eating out, parties and celebrations. They are important for children’s
social development and diabetes is no reason to miss out. For these occasional times,
the meal plan can be relaxed without affecting overall diabetes control.
• The number one rule is HAVE FUN! Parties are special for all children.
• Before the party, chat to your child about what foods may be there and what they
may choose.
• Encourage savoury food choices (e.g., chips, popcorn, party pies and sausage
rolls). Allow some high sugar foods such as birthday cake or ice-creams.
• Provide the host with simple instructions about ‘hypo ’management and reassure
them that high sugar foods occasionally will do no harm.
• It is easy to have diet soft drinks and diet cordials at parties for everyone to enjoy.
If blood glucose levels are high after the party, don’t be tempted to restrict intake
at dinner, as this may result in a low blood glucose level later in the night.
Offer healthy carbohydrate food choices at the evening meal, test the blood
glucose level before bed and give extra snacks if needed.
Sometimes children eat less food at parties because they don’t think they can eat
party food or they are too busy playing. If this is the case and there have been lots of
active games, it is important that your child has a good supper before going to bed to
avoid overnight hypos. They may need to eat extra supper if they ate little at the party.

If you are holding the party you can easily control the food provided. Remember to
plan lots of active games. Children don’t expect all high sugar foods and anything
that is a novelty is fun enough. Try a theme or dress-up party with foods to match
(e.g., American baseball and hot dogs, Mexican tacos or a Hawaiian pool party).

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6: Food and healthy eating

Healthy takeaways
Takeway food can be a part of a healthy eating plan for your child, particularly if you
select foods lower in fat and sugar such as the following:
• Sandwich bar: Rolls, bagels, foccacia, pita bread, sandwiches and so on, filled
with lean meat, chicken, fish, egg, baked beans or cheese and salad.
• Pasta or pizza parlour: Pasta with tomato-based sauces; lasagne; thin-based pizza;
vegetarian pizza topped with tomato, onion, capsicum, pineapple, mushrooms
and a light sprinkling of cheese.
• Salad bar: Fresh salads such as coleslaw, potato, tabouleh, pasta, bean and rice;
low fat yoghurt; fruit smoothies; fruit salad; pita bread, rolls and sandwiches;
milkshakes.
• Chinese: Steamed rice or noodles, stir-fried dishes, steamed dim sims.
• Lebanese: Kebabs with meat or chicken and salad, felafel rolls.
• Hot food or takeaway shop: Hamburger – plain with salad, steak sandwich,
grilled fish, BBQ or charcoal chicken, chicken burger, baked potato, chunky
potato wedges, mashed potato and gravy, soup with a roll, toasted sandwiches.

Adapting recipes
You will still be able to use your favourite recipes for meals and snacks.
Some modification may be necessary to reduce the fat or sugar content.
Discuss this with your dietitian if unsure.

Suggestions in cooking
• Halve the sugar in your usual cake recipes (e.g., if the recipe usually has one cup
sugar, change it to half a cup). Sugar is still necessary for taste and texture and it
doesn’t cause a big rise in blood glucose levels if included as part of a balanced
diet.
• Try to use polyunsaturated or monounsaturated margarine, canola or olive oil in
cooking in place of butter, lard or dripping.
• Try to use low fat ingredients where possible (e.g., low fat cheese and milk).
• Try to incorporate some low GI foods in your ingredients whenever practical
(e.g., oatbran, dried apricots, muesli, yoghurt, fruits).

Snack ideas
It is important to have some variety in the foods that your child eats. Some children
get into a habit of very limited choices which they then tire of.

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6: Food and healthy eating
Here are some ideas
• Fresh fruit salad – try it with yoghurt or low fat ice-cream.
• Bread, muffins, raisin bread, crumpets or bagels.
• Baked beans or spaghetti on toast, jaffles.
• Currant buns, scones or fruit scones, pancakes or pikelets.
• Microwaved popcorn or on the stove with a tiny amount of oil.
• Pretzels or rice crackers – plain or flavoured.
• Bagels or pitta crisps.
• Dip and crackers or raw vegies – mix low fat yoghurt, creamed cottage cheese
or ricotta with french onion packet soup mix or peanut butter.
• Fruit smoothie – mix low fat milk, low fat yoghurt and fruit.
• Hot chocolate drink – low fat milk and cocoa mix or a couple of teaspoons
of Milo in milk.
• Crackers: water crackers or other light cracker biscuits.
• Low fat yoghurts – put a container in the freezer for about an hour to make a
delicious frozen snack
• Low fat ice-cream.
• Light flavoured milk or milk with flavouring
• Fruit snack packs.
Ask your dietitian for more snack ideas.

Diabetes and coeliac disease


People with type 1 diabetes have an increased risk of developing coeliac disease.
Coeliac disease affects approximately 5 per cent of children with diabetes.
Coeliac disease is a condition where the lining of the small intestine (or small bowel)
is damaged due to a sensitivity to the protein gluten, found in the grains wheat, rye,
oats, barley and triticale. The damaged lining of the intestine makes it very difficult
for the body to absorb nutrients from food and can result in weight loss, poor growth,
lack of energy, diarrhoea and a swollen belly. However, in children with diabetes,
there may be no obvious symptoms of coeliac disease. Children who have diabetes
and undiagnosed coeliac disease may be more susceptible to hypoglycaemia due to
unreliable absorption of food.
A blood test can be done to screen for coeliac disease (anti-gliadin antibody,
anti-endomysial antibody or anti-tissue transglutaminase antibody). If this screening
blood test is positive, a small bowel biopsy will usually be recommended, as this is
the only way to confirm the diagnosis.
Treatment involves avoiding all foods which contain gluten. The diet relies on potato,
corn and rice products, fruit, dairy and other gluten-free food items to meet
carbohydrate requirements. Commencing a gluten-free diet will allow the lining of
the small intestine to recover, improving absorption and promoting normal growth
and development. Where a child has coeliac disease, special resources are available
to help. Families can join the Coeliac Society and obtain more of information
and support.

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6: Food and healthy eating

Common questions and answers

How accurate do I need to be with the amount of carbohydrate


? foods?
Modern insulin plans (injection or pump) work best when there is
accurate matching of carbohydrate intake to insulin doses. Thus, it is
worth working on this and doing the best you can. Sometimes it is not
easy, e.g., unfamiliar foods or restaurant meals, but at home you can
more easily estimate accurately by using scales and reading food labels as
needed.

What should I do if my child’s blood glucose level is high at meal


? or snack time?
The approach varies according to the circumstances and whether the
child is treated with injections or a pump.
Injections: The meal or snack should be given as usual, but if they are
not very hungry then eating a little less is fine. Not giving food when a
child is hungry just because the blood glucose is high is not recommended
and may be interpreted as punishment. If insulin is due at the time,
giving extra rapid or short-acting insulin is a good idea. If an insulin
dose is not due, you should also consider giving an extra injection of
rapid or short-acting insulin so that the BGL does not stay high. If the
blood glucose remains high or there are ketones in the urine, refer to the
section on sick days. If this is happening regularly, then it is more
appropriate to review overall insulin doses.
Pump: a correction can easily be given with the pump, either with a meal
or snack, or in-between. The pump wizard or calculator guides this.

What happens if my child eats too much carbohydrate at a meal


? or snack?
This will happen sometimes as appetite varies. If it is significantly more
than the usual, blood glucose levels may be elevated, but usually only for
a few hours. If your child is more active and eating more, then it usually
balances out well, since extra carbohydrate is needed when more active.
If your child is on a pump, the extra carbohydrate can be bolused for
after the meal or a correction dose given later if needed.
If on injections and insulin is not due but your child is very hungry and
eats a lot, then give an extra rapid or short-acting insulin injection so
the BGL does not go high.

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6: Food and healthy eating
What if my child does not want to eat?

? Your child may be feeling unwell or just not hungry. On many insulin
patterns, e.g., pump or multiple daily injections, the meal can often be
delayed until the child feels ready to eat provided that the BGL level is
fine. Work at establishing consistent eating patterns as discussed earlier
in this chapter and avoid feeding young children too often, since this
may reduce appetite at routine meal and snack times.
Sometimes it is reasonable to offer substitutions of food, but this should
not be for “junk foods” and be careful of setting up a pattern where you
become a slave in the kitchen, trying to cater for all whims. Offer a
limited number of healthy choices e.g., Would you like yoghurt or
banana instead?

Just after diagnosis my child was very hungry and eating a lot,
? but is now less hungry. Why is this?
At first, the body has to make up for the weight loss before the diabetes
was treated. After that the appetite usually decreases back to normal.
Your diabetes team will advise and also guide you with any insulin
adjustments that may be needed at the time.

Will my child become overweight as a teenager or adult because


? they have diabetes?
No, but this is possible if the balance between food intake, insulin and
exercise is not right. Genes are also a factor, so if there is a tendency to
being overweight in the family, there is increased risk. Sensible, healthy
eating, particularly keeping the diet reasonably low in fat, and adequate
exercise are the keys to avoiding gaining too much weight. If you are
concerned about your child’s weight, speak to your diabetes doctor and
dietitian who can help to get the balance right.

Is it OK to have artificial sweeteners?


? Sweeteners such as sorbitol in diabetic sweets should be kept to small
quantities only, since diarrhoea and tummy cramps may occur. Artificial
sweeteners are widely used in diet drinks and cordials and if taken in
moderation are safe and acceptable. Some sweeteners (e.g., Splenda,
stevia) can be used in baking, but using ordinary sugar is a reasonable
alternative since in a mixed food type the effects on blood glucose levels
are likely to be small. Extensive use of artificial sweeteners is not
necessary because sugar can be used in moderation as part of a healthy,
balanced diet without upsetting diabetes control.

Caring for diabetes in children and adolescents 63


7: Monitoring diabetes control

Chapter 7 Monitoring diabetes control

Key Points
u Diabetes monitoring can be divided into:
v Monitoring of blood glucose levels throughout the day
v Monitoring of blood or urine ketones when the blood glucose
is high, or the child is unwell – see section 10
v Monitoring of long-term control – the Haemoglobin A1c test –
See section 16

u T
 est the blood glucose level (BGL) preferably four to six times per
day, or more often if needed
v Vary the times of tests sometimes to know what is happening at
different times
v Test at night periodically

u Target ranges for blood glucose levels are generally:


v Before meals 4 to 7 mmol/l
v After meals 5 to 10 mmol/l
v at bed time 6 to 10 mmol/l
v at 3am 5 to 8 mmol/l
v your diabetes team may give you individualized targets which are
slightly different to these

u Keep a record of BGLs, either a record book or electronically

u Check the blood or urine for ketones if:


v Your child is unwell, especially if the BGL is > 15 mmol/l
v Your child is well:
u If using injections and the BGL remains persistently above
15 mmol/l over a few hours of checking
u If using an insulin pump and BGL > 15 mmol/l, always check
for ketones (refer to chapter 18)

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7: Monitoring diabetes control
Blood glucose monitoring
Blood glucose measurements are important to:
• monitor daily blood glucose control and allow insulin adjustment
• detect high or low blood glucose levels so that treatment can be given if needed
• monitor and treat diabetes during illnesses and exercise.

Blood glucose meters


An accurate blood glucose meter is essential for management of diabetes.
A variety of blood glucose meters are available from different manufacturers.
These currently all rely on a drop of blood from a fingerprick being placed on or
drawn into a special strip from which the machine reads the blood glucose level.
There are two main types of meter available:
• Bio-electric meters: The glucose in the blood generates an electrical current on
the strip. This current is converted by the machine to a blood glucose level.
• Reflectance meters: The glucose in the blood changes the colour of the test strip.
The machine reads the colour of the strip by reflecting a light beam from it and
converts this into a blood glucose reading.
Your diabetes educator will guide you as to the most suitable blood glucose meter for
your child – different meters may suit different children and families. When choosing
a meter you may consider different features such as size, test time, size of drop of
blood required, price and other features such as memory and ability to transfer
readings to computer programs.
Chapter

Special points about blood glucose meters:


• All available machines will give satisfactory readings if used properly. All can be
prone to errors if not used or maintained correctly.
• Most meters need to be calibrated to the batch of strips you are using.
The instructions for the meter will tell you how to do this.
• Some meters have control solutions or check strips available, which you can use
to check the accuracy of the readings according to the manufacturer’s
recommendations. However, these are not always readily available and have an
additional cost. If you are concerned about the performance of your meter,
contact the manufacturer for advice and service or ask your diabetes team.
• Meters should be cleaned regularly according to the manufacturer’s instructions
to avoid particles of blood obscuring the measurement processes.
• Most meters can give falsely low readings if too small a drop of blood is used.
Your educator and the meter instructions will guide you as to the size of the
drop required.

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7: Monitoring diabetes control

• Meters all have a limited life span and may become more troublesome or
unreliable after three to four years of use. Within this time it is recommended
that you upgrade your meter or check its accuracy more frequently.
• Machines have a temperature range within which they are meant to operate and
can be less accurate when used outside this range.
• No meter is as accurate as a laboratory blood test but they are accurate enough to
guide diabetes management. Accuracy is within 10 to 15 per cent when used
correctly. It is best not to use more than one brand of meter at any time since
there will be minor variation between different meters.
• A number of meters can store readings which can be accessed from the memory
or downloaded via a computer link. Your diabetes centre has the facilities to
download readings to a computer or it is available for home use. Meter memories
and downloads are not a substitute for keeping a more complete diabetes diary or
electronic log book – this is still important as it allows recording of insulin doses
and notes to be made about any other issues affecting the diabetes on a daily basis.
Such information is important to allow informed adjustments.
• Meters are mechanical devices and can break down or be damaged. It is a good
idea to have a spare meter as a back-up. An alternative back-up is to also have
some visual test strips at home. These are strips onto which a drop of blood is
placed and then wiped off after a measured time period. The approximate blood
glucose can then be read by comparing the colour of the strip with a colour chart
on the side of the package. Several brands of these are available from your chemist
or supplier.

Obtaining the blood sample – lancet devices (finger prickers)


A number of lancet devices (also called finger pricking or finger stick devices) are
available and your educator can advise which is best for your child. The part that
pricks the finger is called a lancet. Very fine lancets cause less pain and damage to the
fingers and are recommended for use in children. Some devices allow the depth of
penetration of the lancet to be varied which can reduce discomfort in some children.

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7: Monitoring diabetes control
Some devices also allow a blood sample to be collected from sites other than the
finger – areas that can be used include the side of the hand, forearm and thigh.
This is called alternate site testing and may be preferred by some. One precaution
is that alternate site testing may not be as accurate as pricking the finger at times
of hypoglycaemia or when the BGL may be changing rapidly. In any such situations,
obtaining the sample from a finger is best.

When should we test?


The amount of blood glucose testing needed varies from person to person and from
time to time, however more monitoring of BGLs is generally associated with better
control, since there is more information available on which to base insulin
adjustments. Very young children often need more testing and children of all ages
need to test more if the diabetes control is unstable.

Recommended testing
• Four to six times per day to give a picture of what blood glucose levels are like over
the 24-hour period but sometimes more often. It is unwise to do less than
4 BGLs per day and more are often needed. These BGLs are required to maintain
the BGL in a safe range and to identify problems early.
• Times to test are:
• Before breakfast (often called the fasting or waking BGL) and before all other
main meals.
• Before bed. A blood glucose level between 6 and 10 mmol/l is desirable at
bed time. If the blood glucose level is less than 6 mmol/l, an additional snack
is needed for most people.
• One or more other tests varied at other times of the day (e.g., before morning
tea or afternoon tea, during the night).
• Test at night regularly. 11pm and 3am are useful times to test. This is not
practical every night, but up to once per week is recommended. This is
especially important if morning blood glucose levels have been low,
long-acting insulin doses have been changed, your child has had a very active
day or has low readings during the evening. The blood glucose level should
be 6 mmol/l or higher in the late evening and above 5 mmol/l at 3 am.
If you find abnormal night readings, you must make adjustments and keep
testing until BGLs become satisfactory. Contact your diabetes team if unsure.
• Before during and after sport or vigorous exercise.
• More often during sick days or if high blood glucose levels are suspected.
• If low blood glucose (a hypo) is suspected.
• After a hypo to confirm that the blood glucose is back in the desired range.
• After meals (post-prandial testing): Many people are in a pattern of testing BGLs
before main meals. However, we now realise that it is also important to sometimes
check BGLs after meals to make sure that the pre-meal dose of insulin was
adequate. If you are not checking after meals, there is the possibility of large
glucose rises which will contribute to less satisfactory overall control
and to a risk of complications. Test sometimes 2 hours after breakfast
(before morning tea), 2 hours after lunch (before afternoon tea) or 2 hours after
dinner (before supper). The target is to have a BGL in the range 5-10 mmol/l at
these times.

Caring for diabetes in children and adolescents 67


7: Monitoring diabetes control

Performing a test and recording


1. Calibration and set-up of the meter will vary according to the manufacturer’s
instructions, which should always be followed. Make sure strips are not past their
use-by date. It is important that the date and time are set correctly in the meter
since this is important for you and your diabetes team when assessing BGLs.
Be careful to check and reset the time and date if needed after battery changes.
2. Wash and dry hands or the other area to be pricked. This is important to avoid
infection and so that food or drink residue does not give a falsely high reading.
This is a common reason for an unexpected high reading.
3. Ensure that a new lancet is being used. The points of lancets dull very quickly,
causing more discomfort and damage to the fingers. Preferably change the lancet
for every BGL test or at least once per day.
4. Prick the finger on the sides of the finger tip (see illustration). Avoid pricking the
tops or the pads of the fingers as repeated pricking in these locations can cause
loss of fine touch sensation. Spread the finger pricks around different fingers so
thickened areas do not develop. Some children prefer not to use certain fingers
(e.g., the second or index finger). If you are using a device where pricks can be
done other than on the fingers (alternate site testing), full details will come with
the device.

Where to prick fingers for testing

5. Squeeze an adequate drop of blood onto the strip. If the strip you have sucks up
the blood, make sure that you hold it against the blood droplet for enough time
to draw a good sample. Remember, meters can give errors if too little blood is
placed on the strip.
6. When the test result is available, record this in your blood glucose record along
with any relevant notes (see the example below). Even though most meters have
memories for a number of blood glucose readings, it is important to keep a record
book or electronic record to allow patterns of readings to be examined and make
other notes about insulin doses, food, activity, illness and so on which may be
affecting readings. The record book (either manual or an electronic version) is a
very important resource for you, your doctor and educator to assess progress and
help make adjustments.
Pump users should enter blood glucose levels into their pump, to use in the bolus
calculation and to store an electronic record (see chapter 18). Some meters used with
pumps automatically store the BGL in the electronic pump record.

68 Caring for diabetes in children and adolescents


7: Monitoring diabetes control
Sample page from a blood glucose record book

What are the target blood glucose levels?


The blood glucose level of a person without diabetes is quite tightly controlled within
a range of approximately 3.5 to 8 mmol/l. In people with diabetes, blood glucose
levels are likely to be more variable and it is not possible to always keep the blood
glucose within this range.
Target blood glucose ranges are recommended to keep blood glucose levels as
near as possible to the normal range, without the risk of too many low readings
(hypoglycaemia). Each child should have their targets individually determined with
the goal of achieving a value as close to normal as possible. The ranges vary a little
for different ages.
At bed time the recommended target range is set a little higher to reduce the chance
of hypoglycaemia at night. The blood glucose level should be checked regularly in the
late evening or overnight (2 to 3 am). Levels above 6 mmol/l in the late evening
and above 5 mmol/l at 2-3 am are desirable.

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7: Monitoring diabetes control

Recommended target ranges:


• Target ranges for blood glucose levels are generally
• Before meals: 4 to 7 mmol/l
• After meals: 5 to 10 mmol/l
• at bed time: 6 to 10 mmol/l
• at 3am: 5 to 8 mmol/l

• your diabetes team may give you individualized targets which are
slightly different to these depending on local practices or your
individual circumstances

Realistic expectations and problems with blood


glucose levels
While we would like to have all blood glucose levels within the target range, this is
rarely possible. Blood glucose levels may vary for many reasons, including variation
in food, activity, insulin absorption and mood. Some of these are predictable and
some totally unpredictable.
Aim to have as many readings as possible within the target range, but accept that this
is often not possible. Realistically, most people achieve only 60 to 80 per cent of
readings within the target range. Unless the out-of-range readings are very high, this
pattern is still compatible with good overall control. Of course, when more than a few
readings are out of the target range, it is important to explore why. Too many readings
or constant readings outside the target range mean insulin doses need reviewing and
perhaps other aspects such as food and exercise. If most readings are within the target
range then the overall control is likely to be good.
There are also certain times when some people find control more variable or difficult,
such as during school holidays, when travelling or in the winter months when activity
may be less. All you can do is try to adjust factors within your control and consult
your diabetes team if things are too difficult or not settling with time.
It is important not to use judgmental words like ‘bad’ to describe your child’s blood
glucose levels. Usually a high or low level is beyond their control and it is important
that they do not feel they are being judged by their levels (e.g., you are bad if you have
a bad blood glucose level). For levels outside the target range it is better to talk simply
about high or low blood glucose levels.
It is important that parents maintain a degree of supervision over blood glucose
testing and recording that is appropriate for the child’s age. Understandably, children
can tire of blood glucose testing and recording. Unless supervised, this can become
too infrequent, be done carelessly, be poorly recorded or not done at all. There can
be the temptation for children to ‘fudge’ results by writing in a reading without
testing or by writing in readings that will better please their parents or diabetes team.
This often occurs in otherwise responsible children and indicates the difficulties that
diabetes can pose. A sympathetic approach with firm guidance and a spirit of
teamwork will often prevent or overcome such problems. Reviewing the meter
memory and meter downloads are useful to check on the accuracy of recording.

70 Caring for diabetes in children and adolescents


7: Monitoring diabetes control
Unstable blood glucose levels
When blood glucose levels are unstable, there are a number of things to think about
and check:
• Do extra blood glucose monitoring to get a better idea of the day’s readings
and allow patterns to be seen.
• Is the blood glucose technique correct and has the meter been checked for
accuracy? Check the technique and check the meter with control solutions.
If there is any doubt about the meter, contact the manufacturer for advice.
• Make sure your child is washing and drying their hands well before the test,
or using a mini-wipe. Wet hands will cause dilution of the blood sample and a
falsely low reading.
• Are all the insulin doses being given? Some older children and teenagers may
forget injections or pump boluses and need reminders and supervision.
• If your child is on an insulin pump therapy and levels are suddenly high, check to
see that the pump is operating and check the line and cannula.
• Is the insulin being given into lumpy sites? Check the sites and move away from
lumpy areas. This is an extremely common problem. Insulin absorption can
vary by up to 25 per cent from day to day, even in healthy injection sites.
This variability is made worse if injection sites are lumpy.
• If cloudy insulin is being used, is it being mixed properly before injection or
injected appropriately? Improperly mixed insulin suspensions and injections that
are too deep or shallow will cause a lot of day-to-day variation.
• Is the insulin out of date or has it been affected by extremes of temperature?
This is especially common in summer and when away on holidays.
• Is the carbohydrate intake variable or uncontrolled? This is also a very common
issue.
• Are appropriate adjustments of food and insulin being made to cope with sports
and exercise?
• Are emotional factors upsetting your child? This can contribute to stress, poor
adherence with diabetes routines and unstable blood glucose levels. Ask your
diabetes team for advice.
• Is your child unwell with an infection or other illness? Consult your doctor if this
may be the problem.
• Sometimes the reason for unstable blood glucose levels is not clear and it is a
matter of waiting for a pattern to emerge. Contact your educator or doctor if you
are concerned.

Haemoglobin A1c
Haemoglobin A1c measurement is a blood test which should be performed about
every three months to look at overall long-term diabetes control. It is discussed more
in chapter 16.

Ketone testing
Testing for ketones is necessary if the blood glucose is persistently elevated above
15 mmol/l or during periods of illness.

Caring for diabetes in children and adolescents 71


7: Monitoring diabetes control

Always check for ketones in the following circumstances:


• If your child is unwell and the BGL is > 15 mmol/l
• If your child is well:
• If using injections and the BGL remains persistently above 15 mmol/l over a
few hours of checking. If your child is well and has one BGL above 15, it is
not necessary to check for ketones right away. Recheck the BGL in about
2 hours and check for ketones then if the BGL remains above 15 mmol/l.
Regardless of whether it is necessary to check ketones, you may still decide
to give a correction dose of insulin if the BGL is high (see chapters
9 and 10)
• If using an insulin pump and BGL > 15 mmol/l, always check for ketones
without delay (refer to chapter 18)
Traditionally ketones have been tested in urine; however some meters are available
that can test ketones in blood. Blood testing for ketones can give an earlier warning
of ketones and is likely to be more accurate. Nevertheless, urine ketone testing is
quite adequate in most situations.
When ketones are present with a high blood glucose, this means more insulin is
needed. This is discussed in detail in chapter 10. Urine test strips also detect glucose
which appears in the urine if blood glucose levels are high, but the main point of
urine testing is to detect ketones.

Continuous glucose monitoring systems (CGMS)


Continuous glucose monitoring systems have started to become available.
At the time of publication, only one system is available in Australia – the Medtronic
CGMS. Other systems are also likely to be available in Australia soon. These glucose
sensors can give a glucose reading continuously every 5 minutes for up to 6 days
via a probe placed under the skin. The probe communicates wirelessly with an
insulin pump or other receiving device which displays and stores the
BGL readings.
Sensors have trend indicators and alarms
to indicate to the user if the glucose is
above or below the set level or if there is a
rapid change in glucose levels occurring. It
is important to realise that the current
generation of continuous sensors measure
“tissue” glucose rather than "blood”
glucose”. In most situations there is good
correlation between tissue and blood
glucose levels, however in times of rapidly
changing blood glucose levels there may be
significant lag in the sensor response and
the correlation between tissue and blood
becomes less accurate. CGMS sensors also
start to lose accuracy at lower blood glucose
levels, so this needs to be borne in mind A CGMS device wirelessly connected
when setting low glucose level alerts. to a receiver
The trends and patterns of the readings are
the most important thing.

72 Caring for diabetes in children and adolescents


7: Monitoring diabetes control
CGMS gives much more information about blood glucose patterns. Some finger
prick BGLs are still needed, but usually only 2 or 3 per day. The main barrier to
greater use of CGMS is currently the cost. More details about CGMS can be found
in chapter 18.

Breakfast Lunch Dinner

12 am 4 am 8 am 12 pm 4 pm 8 pm 12 am

An exampling of BGL profiles over 4 days from a CGMS device

The ultimate goal in continuous glucose sensing is for a “closed-loop” between a


glucose sensor and an insulin delivery system. In a closed-loop system insulin would
be delivered in response to current glucose levels in much the same way as a healthy
pancreas. Such systems are under development.

Non-invasive blood glucose monitoring


Many other interesting technologies for blood glucose measurement are under
research and development; however, this is a technologically difficult area and
there is usually a long time between the idea and the reality.
Non-invasive glucose monitoring has long been a goal, i.e., a method of measuring
the BGL without having to prick the finger or place a probe under the skin.
Currently there are no such devices available for use, but this is an active area of
research. Your diabetes team will keep you informed of new developments and
their progress.

Caring for diabetes in children and adolescents 73


7: Monitoring diabetes control

Common questions and answers

How accurate are blood glucose meters?


? Blood glucose meters are not as accurate as laboratory blood glucose
measurements, but if the test is done correctly, the degree of accuracy is
perfectly fine and within 10 to 15 per cent. Many meters will give
inaccurate results (read low) if not enough blood is applied. Using the
same meter consistently will decrease any variation that occurs between
different meters.

My child will only test twice daily, at breakfast and dinner.


? Is this OK?
No. The minimum number of BGLs that are required for safety and to
guide insulin adjustment is 4 per day and at least one overnight BGL a
week. Children can tire of BGL testing and it is very important that you
encourage and support your child to do their tests.

My son will not keep a diabetes record book as he says the

? readings are all in the memory of his blood glucose meter.


Is this a problem?
Currently, there is no electronic meter record which is an adequate
replacement for the diabetes record book. Because meter memories are
rarely reviewed people do not recognise when things are going wrong.
When a book is used, many readings are easily seen and give immediate
feedback on how the diabetes is going. It is important that you support
your child/adolescent whenever they are doing their BGLs at home.
Help them by writing the result in the book for them. This also allows
you a chance to review the results in a non- threatening way. You should
review your child’s/adolescent’s BGLs at least once a week. If preferred,
computer based versions of log books can be used.
For pump users, the pump system can serve as a complete record,
provided that all BGLs are entered into or transferred into the system.

I worry that I cannot get all of the blood glucose readings in the
? target range. What am I doing wrong?
Probably nothing. It is impossible to get all readings in the target range
in diabetes. There will always be a number of readings above, and
occasionally some below. If most of the readings are in or near the target
range you are doing well. If many readings are outside the target range,
insulin doses need to be reconsidered. Your doctor will arrange a
haemoglobin A1c test every three months which gives a check on overall
diabetes control.

74 Caring for diabetes in children and adolescents


7: Monitoring diabetes control
Does it matter if my child does not wash his hands before a

? blood glucose reading?


Yes, this could be a problem as food or drink particles on the fingers may
give a falsely high reading and infection is more likely. If soap and water
are not available, wet wipes are a good alternative. Make sure the hands
are dried properly before testing.

My child has favourite finger prick sites. Does this matter?


? Yes. Favourite spots will often get thickened scar tissue and tend to hurt
less, but the finger prick sites will heal more slowly and infection may be
an increased risk. The finger prick sites should be spread around
different fingers and always remember to use the sides of the fingertip.
Some people do prefer not to use certain fingers and this is fine as long
as they are being spread around a reasonable amount.

My child has difficulty getting enough blood from finger pricks.


? Any suggestions?
Make sure the fingers are warm and that the prick is done in the correct
position where blood can be squeezed toward the end of the finger.
If blood is being squeezed toward the end of the finger you should see it
getting redder, not paler. It may help to keep the finger below the level
of the heart when doing a test. Some lancet devices (finger prickers)
have an adjustable setting – try adjusting this to a greater depth.

What do we do if our blood glucose meter breaks down?


? Call the manufacturer or your educator, and a replacement should be
able to be quickly arranged. It is a good idea to have a spare meter
available as a back-up. Alternatively, most pharmacies sell meters or you
can get some visual test strips. With visual test strips, a finger prick is
done as usual and blood is placed on the strip. The blood is wiped off
the strip after the specified time, and the colour of the strip is compared
with the chart on the bottle to give an approximate reading. Several
brands of visual test strips are available.

Should we be using CGMS? Our son is not keen on the idea and
? it seems expensive?
CGMS is an emerging technology and is likely to be increasingly used.
Systems will improve further and it will be used more if it becomes
cheaper. Good diabetes management can still occur with sufficient
finger prick BGL monitoring, so if you are not keen to pursue CGMS,
concentrate on getting a good amount of testing by fingerprick and
looking for patterns. However, CGMS can assist with additional glucose
profiling and is especially popular amongst some pump users. It is also
an option to use CGMS for occasional periods for extra information,
rather than continuously. Ask your diabetes team for the latest information.

Caring for diabetes in children and adolescents 75


8: Hypoglycaemia (low blood glucose levels)

Chapter 8 H
 ypoglycaemia
(low blood glucose levels)

Key Points
u H
 ypoglycaemia (a hypo) occurs when the blood glucose level is less
than 4 mmol/l, or where there are symptoms of a hypo at a level
close to this
u M
 ain causes of hypos are exercise, missed or delayed meals,
not eating enough carbohydrate, or having too much insulin
 o treat a mild or moderate hypo give approximately 10 to
u T
20 grams of fast-acting carbohydrate (sugary food) such as is
contained in:
v glucose tablets or glucose gel 10-20 grams
(not tablets in children under 5 years)
v Lucozade 60-120 ml
v ordinary soft drink or cordial 125-250 ml
v fruit juice 125-250 ml
v sugar or honey (two to four teaspoons)
v jelly beans – 3 to 6 large or 6 to 12 small jelly beans
(not in children under 5 years)
u T
 he amount of glucose needed to treat a hypo depends on a child’s
size, insulin plan, recent insulin doses and recent exercise. Bigger,
older children and adults require the larger amount and sometimes
more
u U
 sually, follow up the fast-acting carbohydrate with an exchange or
serve of slow-acting carbohydrate such as bread, milk, biscuits,
apple, banana, but not all will need these (often not needed for
those on pumps)
u In a severe hypo, the child may be extremely drowsy or
disorientated or become unconscious or have a fit.
u To treat a severe hypo:
v Do not give anything by mouth
v Lie the child on their side
v Give an injection of glucagon. 1 ml if over five years, 0.5 ml
if under five
u C
 all an ambulance if the situation does not improve quickly or you
need help
u M
 ini-Dose Glucagon is a special strategy to treat or prevent
further hypoglycaemia when a child is mildly unwell and blood
glucose levels are trending low, but not severely low – see chapter
10, Sick days

76 Caring for diabetes in children and adolescents


8: Hypoglycaemia (low blood glucose levels)
Hypoglycaemia (commonly called a hypo) occurs
when the blood glucose level is too low. There is
some debate in medical circles about an exact
“cut-off” value that defines hypoglycaemia, however
for practical purposes most would agree with a level
of less than 4 mmol/l. Hypos can be graded according
to whether they are mild, moderate or severe.
Mild hypos are common and nearly all children
experience these at times. Fortunately, severe hypos
are rare, but you need to know how to deal with
them just in case.

Symptoms of hypos
A hypo is a blood glucose level of 4 mmol/l or less, or if your child has one
or more of the following symptoms at a level near 4 mmol/l:

• paleness • heart pounding


• shakiness • irritability, change in mood
• headache • lack of concentration
• sweating • confusion, vagueness
• feeling hungry • crying
• dizziness • weakness
Chapter
• blurred vision

Your child may show other symptoms, but these are the most common.
8
In severe hypos the blood glucose is very low. The child becomes very drowsy,
extremely disorientated, aggressive, unconscious or may have a fit or
convulsion (see below).

Infants and young children are usually not able to indicate that they feel unwell and
may show few signs. Parents or carers may only recognise subtle signs such as paleness
or irritability – if in doubt check the blood glucose level.
Hypo symptoms occur for two reasons:
1. The body produces chemical messengers (hormones) to attempt to raise the blood
glucose level. Adrenaline is the main one and causes most of the symptoms.
2. The brain is not getting enough glucose to keep working normally. Unfortunately
there is no foolproof way of recognising a hypo, so when in doubt checking the
blood glucose level will tell you what is happening.
Not everyone feels the same when their blood glucose level is low and the symptoms
and signs may not always be the same. However, most people with diabetes learn to
recognise the feelings they have when their blood glucose is too low. Occasionally,
some people have difficulty knowing because they don’t feel different at all.

Caring for diabetes in children and adolescents 77


8: Hypoglycaemia (low blood glucose levels)

What causes hypos?


With diabetes, the blood glucose could drop low at any time, but a hypo is often
related to an imbalance between insulin, food and exercise. To understand this,
it is helpful to recall how each of these affects the blood glucose:
• insulin lowers blood glucose
• carbohydrate in food raises blood glucose
• exercise usually lowers the blood glucose

The main causes of hypos are:


• exercise, without decreasing the insulin or without eating extra
carbohydrate
• missed or delayed meals, or eating too little carbohydrate at meals
• a recent dose of insulin was too much for the body’s needs
• alcohol intake (see the section on adolescents in chapter 15).

The most common times for hypos are just before the next meal or snack is due or
after sport. However, hypos can also occur unexpectedly and for no obvious reason.
Hypos are usually mild and the treatment is simple but sometimes they can be severe.

What to do for a mild or moderate hypo


Step 1
Give some fast-acting carbohydrate to raise the blood glucose level quickly.
This should be something that can be eaten or drunk quickly and easily and contain
glucose or sucrose. Your local diabetes team may advise a preference, but any of these
will work.
Older children and teenagers will need more than small children, hence a range
is given. 10 g is likely to be adequate for a small child, but a large teenager will need
20 g or more.
Examples include:
• 10 to 20 g of glucose tablets or glucose gel (take care with the amount as these
may come in different sizes and strengths; tablets are not suitable for children
under 5 years of age)
• 60 to 120 ml Lucozade (Lucozade contains 18 g glucose per 100ml)
• 125 to 250 ml (approximately half to one cup) orange or fruit juice
• 125 to 250 ml (approximately half to one cup) ordinary soft drink
(i.e., not a diet drink)
• Sugar or honey – 2 to 4 teaspoons
• Jelly beans – 3 to 6 large, or 6 to 12 small (note, this is approximate since a variety
of sizes are sold). Jelly beans, other sweets or glucose tablets are not advised in
children under 5 years due to choking risk.

78 Caring for diabetes in children and adolescents


8: Hypoglycaemia (low blood glucose levels)
Step 2
This is usually followed by one exchange or serve of slow-acting carbohydrate to help
maintain the blood glucose level, or if a meal is due soon, have that earlier.
Some people find through experience that they may not need the extra long-acting
carbohydrate (or need a lesser amount) – this is common in insulin pump users,
depending on the cause of the hypo.
Examples of slow—acting carbohydrate include:
• one slice of bread
• one exchange or serve of plain biscuits
• one apple or one banana
• 250 ml (1 cup) milk.

Important points about hypos:


• Thinking about why the hypo occurred is important in deciding how much
treatment to give – more glucose / carbohydrate treatment is likely to be needed
if an insulin dose or bolus has just been given or if vigorous exercise has been
occurring
• Foods to treat hypos should always be carried by the family or child or be readily
available (e.g., with the teacher at school, in the car or in a handbag).
• When a young person is having a hypo, they should remain supervised until
recovered and should not be left alone at any time. The hypo treatment should be
with the child or brought to the child; the child should not be sent away to get
the hypo treatment.
• The person should wear an identification bracelet or necklace indicating that they
have diabetes or at least carry some form of identification (e.g., wallet card,
indicating diabetes).

Caring for diabetes in children and adolescents 79


8: Hypoglycaemia (low blood glucose levels)

• Babies and toddlers may require less carbohydrate to treat a hypo – your diabetes
team will discuss this with you. Teenagers and adults need more carbohydrate
than young children to treat a hypo.
• Infants and young children are best given fluids to treat hypos initially.
Jelly beans, lollies or glucose tablets may be a choking risk.
• If a hypo occurs when a meal or snack is due within half an hour, give some
fast-acting carbohydrate followed straight away by the meal or snack, instead of
giving the extra slow-acting carbohydrate.
• After a hypo your child will usually be feeling better within 5 to 10 minutes;
however, it may take a little longer to see a measurable rise in blood glucose levels
(10-20 minutes). Aim to raise the BGL to above 5.5 mmol/l. Ideally the blood
glucose should be checked again 15 to 20 minutes after a hypo, but often families
find this unnecessary as the child is fine and wants to resume normal activities.
Always keep a close eye on your child after a hypo. If the child is not improving
after 5 to 10 minutes, recheck the blood glucose level and repeat the hypo
treatment if necessary.
• Avoid the tendency to over-treat mild hypos, as this causes large blood glucose
peaks (sometimes called rebound highs) that will affect overall control. A hypo
can provoke a strong urge to continue to eat in some people, so be mindful of
this.

What to do for a severe hypo


The symptoms of a severe hypo are:
• extremely drowsy or disorientated
• unconscious, or
• having a fit or convulsion.

1. In a moderate to severe hypo a judgment needs to be made about whether or not
to try treating with sweet foods or drink. The child needs to be conscious enough
to be able to swallow. If the child is too drowsy or disorientated to understand
what you are saying or does not respond to simple instructions then nothing
should be given by mouth – give a full dose glucagon injection.
Do not try to give anything by mouth if the child is unconscious or
fitting - glucagon is needed.
2. Call for help of anyone around.
3. Place the child in the coma/unconscious position, making sure they can breathe.
See the illustration below – do not place a pillow under the child’s head. If the
child is having a fit or convulsion do the same thing. Do not attempt to place
anything in the mouth. Lie the child on their side and stop them from hurting
themselves.

Correct position to place an unconscious child

80 Caring for diabetes in children and adolescents


8: Hypoglycaemia (low blood glucose levels)
4. Give an injection of glucagon if you have one. Glucagon is a hormone that raises
the blood glucose level by making the liver release its store of glucose.
All families should keep glucagon at home and carry it when they travel.
If two adults are available one should stay with the child while the other gets the
glucagon. Don’t be afraid to give the glucagon – it can’t do any harm, it can only
do good in the case of a severe hypo.
5. Call an ambulance if the situation does not improve quickly or you need help.
The emergency number throughout Australia is 000 or 112 from some mobile
phones. The ambulance officers will decide if your child needs to go to hospital
or is recovering satisfactorily.
6. Always contact your diabetes team for advice after a severe hypo. It is important
to think about why the severe hypo occurred and how to prevent further episodes.

Giving a glucagon injection with the GlucaGen hypokit (Novo Nordisk)


The GlucaGen Hypokit contains a synthetic form of glucagon and comes in a kit
with everything that you need. Remember to check the expiry date of your glucagon
periodically and obtain a new supply just before the old one expires. While keeping
or using expired glucagon is not recommended, if you find that the glucagon is past
its expiry date and a severe hypo occurs, you should still give the glucagon as it is likely
to work and will cause no harm.
A glucagon injection is given as follows:
1. Remove the orange cap from the bottle.
2. Remove the grey needle guard.
3. Inject all the sterile water from the syringe into the bottle containing the powder
(the glucagon). Leave the syringe in the bottle.
4. Swirl (don’t shake) the bottle with the syringe in it until the glucagon has dissolved
(leave your finger on the plunger to stop it coming back).
5. Draw up all the glucagon (1 ml) if over five years of age, or half the glucagon
(0.5 ml) if under five years of age.
6. Inject into the front of the thigh or buttock (upper, outer part of buttock) just as
you would an insulin injection. You will see that the needle is longer than an
insulin needle so that the glucagon goes in deeper to the muscle layer where it
works best.
7. Do a blood glucose level.

A GlucaGen Hypokit

Caring for diabetes in children and adolescents 81


8: Hypoglycaemia (low blood glucose levels)

Recovery from a severe hypo


• The child will usually wake in about five to ten minutes. If a fit has occurred it is
usually short and does not cause permanent damage.
• When the child is awake, give sips of ordinary soft drink or other sweet drink
and later follow this with some slow-acting carbohydrate, as in step 2 for a
mild-moderate hypo. Try to avoid over-feeding and be guided by BGL levels.
• A severe hypo or the Glucagon treatment can make your child vomit. They may
also have a headache. Continue to give sips of sweet drink.
• Monitor the blood glucose level frequently (every 15-30 minutes) and when
possible give your child some slow-acting carbohydrate food.
• Your diabetes doctor or educator or on-call service should be contacted.
• Do not omit the usual insulin injection after the hypo but seek medical advice as
to the dose of insulin to give.
• Blood glucose levels are often high soon after a severe hypo. This should not be
treated with extra insulin.
• The ambulance should be called if things do not improve quickly or you just want
some help – state that your child is a diabetic and has had a severe hypo and is
fitting or unconscious. The ambulance officers will help as needed, but
if the child is recovering well, a trip to hospital is not always necessary.
• Remember to replace your glucagon as soon as possible

Mini-dose glucagon treatment


Mini-dose glucagon is a special way of using low-doses of glucagon by subcutaneous
injection when there is a continuing tendency to low glucose levels, but not severe
hypoglycaemia. This is in a situation where your child is unwell, but not seriously
unwell and not persistently vomiting. This is covered in detail in chapter 10 – Sick
days. It can often help you get through a difficult period of lowish BGLs and may
help avoid a trip to hospital.
For severe hypoglcemia (drowsy, coma or seizures), it is very important however, that
full doses of glucagon are given as outlined above and not mini-dose glucagon.

How often do hypos happen?


Many hypos are preventable; however, mild hypos are common. A person with good
diabetes control can be expected to have a few mild hypos each week. Severe hypos
are much less common and many children with diabetes never have a severe one.
When a hypo occurs, it is always wise to consider what may have caused it. This is
usually delayed or missed food or increased activity or exercise without taking more
food or less insulin. Some hypos happen for no apparent reason.

If any of the following are happening, it is likely that insulin adjustment


is needed and if in doubt you should contact your child’s diabetes
educator or doctor:
• More than three or four hypos per week, especially if no reason evident
• Hypos are tending to occur at the same time of the day
• Any severe hypo
• Night hypos, especially if no reason evident

82 Caring for diabetes in children and adolescents


8: Hypoglycaemia (low blood glucose levels)
Night hypoglycaemia
It is important to remember the possibility of hypos at night. They are more likely to
occur after a lot of exercise during the day or if the child has eaten poorly or is unwell.
Sometimes children wake with hypos at night, but often they can sleep through and
the hypo remains undetected. Recurring night hypos can be dangerous and contribute
to memory and concentration problems. Fits or convulsions at night are a risk.
The following will help to prevent or minimise night hypos:
• Regularly checking the blood glucose level at the child’s bed time or in the late
evening aiming for a level of 6 to 10 mmol/l. If less than 6 mmol/l, some extra
slow-acting carbohydrate should be given, for example 5-20 g. The amount needs
to be judged according to the circumstances of the day and past experience,
e.g., give more if has had a very active or low BGL day, less if the BGL is close to
6 mmol/l, more for larger children etc.
• If BGL is less than 4 mmol/l before bed, treat as a hypo with fast-acting then
slow-acting carbohydrate. If low during the evening, it is wise to re-check the
BGL at 2-3 am.
• Some need to have a higher target BGL before bed – your diabetes team will
advise if this is needed.
• Occasionally (e.g., three or four times per month) checking the blood glucose level
when the child is asleep in the late evening (around 11 pm) and/or at
3 am. At 11 pm the blood glucose should generally be above 6 mmol/l and at
2-3 am above 5 mmol/l.
• Pre-bed, late evening or overnight blood tests should especially be considered if
the child has exercised a lot that day or evening, has eaten poorly or is unwell.
• Some find it necessary to reduce evening insulin doses after sport or exercise to
prevent delayed night time hypos (see chapter 11) or if using a pump, to use a
lower temporary basal rate overnight.
• Alcohol intake increases the risk of night hypoglycaemia
Some children in the honeymoon phase (soon after diagnosis) may have lower BGLs
overnight (e.g., 3.5 to 4 mmol/l) which is not hypoglycaemia because their pancreas
is still producing some insulin. Your diabetes team will discuss this with you.

Caring for diabetes in children and adolescents 83


8: Hypoglycaemia (low blood glucose levels)

Hypoglycaemia unawareness
This means that hypoglycaemia is occurring (as measured by BGL or observed by
others), but the person with diabetes is not aware of it.
Toddlers and young children frequently do not sense hypos well or cannot tell you
about them and detecting hypos relies on those caring for them. Children will
gradually learn to recognise and express their hypo symptoms. After a hypo, encourage
them to tell you how they felt to help them learn.
In older children and adolescents, hypoglycaemia unawareness can develop if they
have a period where they are having too many hypos or frequent overnight
hypoglycaemia. This arises because the body’s defence mechanisms against hypos
(such as adrenaline) reset their level at which symptoms will be produced. This can
be a dangerous situation because severe hypos may come on suddenly without the
usual warning. If hypos are occurring without symptoms, you should contact your
doctor or educator for advice. Fortunately this is a fairly uncommon problem and can
usually be fixed by adjustment of insulin doses. Avoiding lots of hypos or long hypos
minimises the risk of hypo unawareness arising. It is usually necessary to run the
blood glucose levels a little higher for a period to restore normal hypoglycaemia
awareness.

84 Caring for diabetes in children and adolescents


8: Hypoglycaemia (low blood glucose levels)
Common questions and answers

My four-year-old doesn’t have many hypos, but when he does he


? doesn’t seem to recognise them. What should I do?
Young children are often not good at recognising hypos, and even if they
do feel funny, may have trouble knowing what this is or expressing it.
With time they usually learn what it feels like and are able to tell you.
When a hypo occurs, after treating it spend a few moments asking how
the child felt and whether they felt any symptoms. This can help the
learning process.

My seven-year-old daughter seems to be having hypos at


? school every morning and asking the teacher for jelly beans.
The teacher says she looks OK, but treats it as a hypo because
she is worried. What should I do?
It may be hypoglycaemia, but some children can go through a stage of
saying they are low to get lollies. The only way to sort out what is
happening is to test the blood glucose at these times, and where possible
always test before treating a hypo. It may also be wise to change the hypo
treatment you have available at the school (e.g., juice boxes are a good
alternative).

How many hypos is too many?


? Most children have occasional mild hypos, often up to four per week.
Usually there is a logical explanation such as extra activity or eating less.
If more than this number is occurring, if there is no explanation for
frequent hypos or there are any severe hypos, some adjustment to the
diabetes management may be needed. Contact your educator or doctor
if unsure.

I have heard that glucagon can make children vomit.

? Should I try not to use it if possible?


In a severe hypo where the child is unconscious or fitting or too drowsy
or uncooperative to take anything by mouth, you must give glucagon in
the full recommended dose. It can do no harm and will raise the blood
glucose. It is true that afterwards there can be some nausea and vomiting
but that can be easily dealt with.

My daughter gets a bad headache after hypos. What should

? we do?
This is not uncommon, and the best thing to do is rest. If necessary,
a dose of paracetamol will help.

Caring for diabetes in children and adolescents 85


8: Hypoglycaemia (low blood glucose levels)

My 15-year-old son is very particular about his diabetes control

? and always has excellent blood glucose levels. In the past three
weeks he has had three major hypos which came on without
warning. Luckily we were there to treat him. What is happening?
This is hypoglycaemia unawareness, and can happen if the blood glucose
levels are generally running too low. The body does not produce a hypo
response until the blood glucose becomes very low, and then it is too late
for the person to respond. The problem can be corrected by adjusting
the insulin so that the blood glucose levels are in a more normal range
and he may need to run his BGLs a little higher for a while. If this is
happening you need to contact your educator or doctor as soon as
possible.

We worry about our daughter having a hypo at night, and

? possibly having a fit. How can we avoid this?


The risk of night hypos can be minimised by checking the blood glucose
before bed, and if the level is less than 6 mmol/l, having some extra
supper. It is wise to periodically check some blood glucose levels at night,
either in the late evening or middle of the night. It is especially a good
idea to test in the late evening or overnight if your child has exercised a
lot that day, eaten less or is not well. Reducing the evening dose of
insulin after vigorous sport or exercise will also help reduce the risk of
night hypos. For some insulin plans, having some supper is important to
reduce the risk of night hypos. The availability of CGMS (continuous
glucose monitoring systems) also allows night BGLs to be monitored and
can be used regularly or occasionally to check the overnight BGL profile.

How can we tell if our child is having a hypo at night?

? Children sometimes wake up if they are having a hypo and they may have
a bad dream. If your child has had a restless night or wakes up feeling
unwell you should be suspicious of hypos and think about overnight
testing. Some night testing is recommended for all people with diabetes.

86 Caring for diabetes in children and adolescents


9: Hyperglycaemia (high blood glucose levels)
Chapter 9 H
 yperglycaemia
(high blood glucose levels)

Key Points
When blood glucose is above 15 mmol/l:
u try to identify possible reasons
u If your child is unwell or if the blood glucose remains above
15 mmol/l, test the urine or blood for ketones
u If blood glucose remains high and there are ketones present, extra
insulin is needed
u Drink extra (sugar-free) fluids
u Pump users must always respond to high BGLs without delay

Hyperglycaemia or a high blood glucose is when the blood glucose is higher than the
desirable range. Target blood glucose ranges were discussed earlier, but are included
here as a reminder.

Recommended target ranges: Chapter


• Target ranges for blood glucose levels are generally
• Before meals 4 to 7 mmol/l 9
• After meals 5 to 10 mmol/l
• at bed time 6 to 10 mmol/l
• at 3am 5 to 8 mmol/l

Nearly all people with diabetes have some blood glucose readings above the target
range. Often this will be just a short-term rise (a few hours) and then the blood
glucose levels fall to the desirable range.

Why blood glucose levels may be high


There are a number of reasons why the blood glucose readings may be high.
These include:
• Eating extra carbohydrate foods.
• Less exercise than usual.
• Sometimes temporarily during or just after vigorous exercise (stress effect).
• Measuring the blood glucose too soon after a meal – usually wait two hours
after eating.
• The insulin dose may be too low or may have been forgotten.
• Emotion, such as excitement or stress.
• Infection or other illness.

Caring for diabetes in children and adolescents 87


9: Hyperglycaemia (high blood glucose levels)

• Glucose on the fingers will give a falsely high reading; if this is suspected, wash
the hands and re-check the blood glucose level.
• Insulin pump users – may be a problem with the infusion set or function of the
pump

What to do about high blood glucose levels


(above 15 mmol/l)
A high blood glucose is a cause for concern. If the BGL is over 15 mmol/l then you
should try to find a cause (from the list above). If the BGL has been elevated for more
than 2 hours or there are symptoms such as thirst, increased urination, excessive
tiredness or feeling unwell then ketones should be assessed.
Usually an injection of short acting insulin (or correction bolus for pump users)
should be given to return the BGL to the normal range. The only times that extra
insulin should not be given is if the high BGL is due to a stress response during or
immediately after exercise (the BGL will usually come down by itself) or if it was due
to sugar on the fingers.
If BGL remains persistently elevated (above 15 mmol/l) for a number of hours and
is not corrected, the following are likely to occur:
• symptoms such as increased thirst, increased urination and excessive tiredness
• ketones are likely to develop
• the child could become sick with ketoacidosis (see section 10 ‘Sick days ’).
General responses to high BGLs are similar, but there are some differences according
to whether treatment is with injections or an insulin pump. This is outlined below
and see more detail on Pumps in Chapter 18.

Do the following with any high blood glucose levels:

If receiving insulin via injections:


• Repeat the blood glucose level in about 2 hours. You may have given an extra
injection or bolus or may be expecting a spontaneous fall – in either case a repeat
BGL is a good idea.
• If your child is unwell (e.g., fever, vomiting, listless etc) or if repeat blood glucose
level is still above 15 mmol/l, then test for ketones.

88 Caring for diabetes in children and adolescents


9: Hyperglycaemia (high blood glucose levels)
• If the blood glucose is above 15 mmol/l and there are ketones present, extra
insulin is needed (see chapter 10 ‘Sick days ’).
• Even if ketones are not present, consider giving an extra dose of rapid or short-
acting insulin to correct the BGL – again, follow the guidelines in chapter 10.
• Drink plenty of fluids when the blood glucose is high; drink water or diet
(sugar-free) drinks. This helps to lower the blood glucose and prevent dehydration.
• Try to identify possible causes (e.g., illness, missed insulin dose others as above).
• Look to see if there is a pattern of the blood glucose rising at the same time each
day – in this case an increase in the appropriate insulin dose should be considered.
• Avoid strenuous exercise if the BGL is high, especially if ketones are present.
If the body is lacking in insulin, exercise will not bring the BGL down (see more
information in chapter 10 'Sick days' and chapter 11 'Exercise and sport')
• It is important to check the blood glucose levels after an extra insulin dose to
make sure it is satisfactory. Be careful with giving extra doses of short-acting
insulin before exercise (the exercise may bring the glucose level down), in the
evening, at bedtime or overnight. At these times it is essential that the BGL is
checked 2 to 3 hours later.

If receiving insulin via a pump:


• High blood glucose levels always need to be addressed without delay in pump
users, since there is no pool of long-acting insulin in the body to help protect
against ketosis and ketoacidosis
• Full details are given in chapter 18 on Pumps, but outlined here
• If BGL is above 15 mmol/l, do the following:
• Immediately check for a problem with the infusion set or pump delivery
• Check the blood for ketones (urine ketones if blood strips are not available)
• If ketones are negative (less than 0.6 mmol/l in blood or negative or trace in
urine), a correction bolus can be given with the pump. If there is any doubt
about the infusion set, this should be changed.
• If ketones are positive (more than 0.6 mmol/l in blood or small, moderate or
large in urine), a correction dose of insulin should be given with a pen or
syringe. Do not rely on the pump at this point – regain control with injections
and then sort out any pump or delivery set problems later
• Think about causes as outlined above, e.g., missed boluses
• Drink extra fluids (water or sugar-free) and avoid strenuous exercise until the
BGL is settling

Caring for diabetes in children and adolescents 89


9: Hyperglycaemia (high blood glucose levels)

Common questions and answers

My three-year-old receives insulin via injections and sometimes


? has blood glucose levels around 16 to 18. Should I give him extra
insulin at these times?
Usually, yes. High BGLs are usually caused by insufficient insulin for the
food that has been eaten. This is corrected by an appropriate extra dose
of insulin or “correction bolus”. If he is well, check the BGL 1-2 hours
later. If BGL remains above 15 mmol/l, or he is unwell in any way, check
for ketones. If the blood glucose stays up or there are ketones present or
he is unwell – refer to the guidelines in chapter 10 ‘Sick Days’. Check
with your doctor or educator if unsure.

When we check our daughter’s blood glucose level before


? supper and bed it is often high, but this is only about one hour
after her dinner. What should we do?
The blood glucose will often be elevated just after a meal. Leave the test
until at least two hours after a meal where possible, even if this means
testing after she has gone to bed. This is a better guide to whether the
insulin needs adjusting.

My son’s BGLs are often high despite increasing the insulin dose,
? and my educator suggested that he may not be giving his insulin.
I am not happy about this suggestion because my son is a good
boy and he knows that he needs his insulin.
Insulin omission is very common, not only with children and teenagers
but adults as well. Many children and adolescents will omit insulin
repeatedly if they are not helped or supervised with their injections or
pump boluses. The reason children and adolescents miss some insulin is
due to an inability to prioritise and plan because they have not yet
reached this stage of brain development. This inability to do injections
or boluses without assistance is not the child/adolescent being “bad”;
it is expected if they don’t receive enough help and supervision.
Also, giving insulin everyday is hard work and to do it in the long term,
the person needs support from their family and friends.
We recommend that you support your child or adolescent on a daily
basis with their injections or pump boluses. When at home, the
pre-meal BGL and the meal content should be discussed together and
the record book filled in. There can be discussion of the appropriate
dose of insulin and the need for any adjustments and the dose can be
checked and administered. Cross-checking doses will reduce errors and
ensures that they are done accurately. Children and adolescents should
not go away into another room unsupervised to test BGL or deliver
insulin. At school, it is also best when possible to have someone assisting
with supervision of BGL monitoring, recording and insulin
administration.

90 Caring for diabetes in children and adolescents


9: Hyperglycaemia (high blood glucose levels)
My 12 year old daughter is on an insulin pump. If the BGL is a

? little high before bed (for example 16 mmol/l), can we just wait
to see if it settles overnight?
No, this situation needs attention now. Insulin pump users do not have
any pool of long-acting insulin in their system, so are prone to more
rapid development of ketones or ketoacidosis if there is interruption to
insulin delivery. Check the infusion set and pump for delivery issues,
check the blood (or urine) for ketones and sort out the situation as
outlined here and in the Pump chapter before going to bed.
An additional BGL check during the night is also likely to be needed.

Caring for diabetes in children and adolescents 91


10: Sick Days

Chapter 10 Sick Days

Key Points
u Illness
 may cause high blood glucose levels or low blood glucose
levels:
v Infections with fever often cause high BGLs
v Gastroenteritis (vomiting and diarrhoea) illnesses often cause
low blood glucose levels
u If high blood glucose levels are not treated, ketones will develop
and your child could become very sick with diabetic ketoacidosis
u Treat the underlying illness. See your doctor if concerned
u Measure blood glucose more often, every two hours at first
u Drink more fluids:
v Sugar-free fluids if the blood glucose level is above 8 mmol/l
v Fluids containing carbohydrate if the blood glucose level is
below 8 mmol/l.
u C
 heck for ketones regularly when sick, especially if the blood
glucose level is above 15 mmol/l
u D
 o not omit or stop insulin. If blood glucose levels are low, less
insulin may be needed – check with your doctor or educator about
what dose to give if unsure.
u If the blood glucose level is above 15 mmol/l and ketones are
present, extra rapid or short-acting insulin is needed – this section
tells you how to work out the extra dose. Sometimes extra insulin
will be needed if the BGL is 8-15 mmol/l.
u Insulin pump users need special precautions – see more detail in
Chapter 18
u Call for advice or go to the hospital if:
v you are unsure what to do
v vomiting persists
v unable to keep blood glucose level above 4 mmol/l
v unable to get blood glucose level below 15 mmol/l with extra
insulin doses, or unable to clear ketones
v child is becoming more unwell
v you are worried or exhausted or don’t know what to do next
v your child is very young
u For illnesses with persisting low blood glucose levels:
v give extra glucose containing fluids
v reduced insulin will be needed
v mini-dose glucagon may also be needed

92 Caring for diabetes in children and adolescents


10: Sick Days
Sick days – introduction
Children and adolescents with well controlled diabetes are not at greater risk of
getting sick with infections or other illnesses. However, when children with diabetes
do get sick, much greater care and attention is required. If the guidelines in this
section are followed, most sick days can be dealt with at home.
Sick days can cause:
1. High blood glucose levels:
These are more common during illness, particularly in viral illnesses with fever
(e.g., influenza or a bad cold) or in bacterial illnesses (e.g., tonsillitis or ear
infections). The blood glucose levels rise as ‘stress’ hormones are released to help
the body cope with illness; however, these stress hormones work against insulin
and the normal insulin given does not work as well (called insulin resistance).
Blood glucose levels will often still be high even if the child’s appetite is poor
because of continuing release of glucose from the liver.
2. Low blood glucose levels
This is likely to occur in stomach and bowel illnesses (gastroenteritis) with nausea,
vomiting and especially diarrhoea but without other general symptoms such as
fever. The blood glucose levels are low because the child’s appetite is often
decreased and the food and drink that is taken is not being well absorbed.
If, during illness, high blood glucose levels are not treated:
• Ketones will develop in the blood (and be found in the blood or urine on testing).
• The body is likely to become dehydrated (high blood glucose levels drag fluid out
of the body into the urine).
• Severe illness with ketoacidosis may occur – see below. Chapter
Knowing how to manage sick days should prevent any major problems like this
developing. 10
The goals of sick day care are to:
• prevent dehydration
• prevent ketoacidosis (high levels of sugar and ketones in the blood)
• prevent hypoglycaemia (low blood glucose levels).

What are ketones?


Ketones are chemicals in the blood which come from the breakdown of fat.
The body makes ketones as an alternative energy source to glucose in some situations.
When there are ketones in the blood they will also be found in the urine and thus a
urine test can also be used to identify ketones.
Ketones in diabetes indicate that there is too little insulin in the body.
Two situations can occur:
1. Glucose levels are high:
This is the commonest situation. Even though the blood glucose level is high, the
body cannot use glucose for energy because of the lack of insulin. Thus, fat is
broken down to form ketones as an alternative energy supply. This can happen
during illness or when insulin doses are too low or have been missed. When the
blood glucose is high, ketones in the blood or urine are a warning sign that the
body needs more insulin (see below). If ketones continue to build up, the child
can become very sick with ketoacidosis.

Caring for diabetes in children and adolescents 93


10: Sick Days

2. Glucose levels are normal or low:


Here the body is lacking insulin and glucose. This can happen in stomach and
bowel illnesses with vomiting and diarrhoea. In this situation more glucose intake
is needed, so insulin doses can continue to be given to turn off ketone production.
If this extra glucose cannot be taken by food or drink, a stay in hospital may be
needed. In illnesses with low blood glucose levels, insulin doses should not be
stopped or omitted, but may need to be lowered (see below).

What is ketoacidosis?
Ketoacidosis is a serious illness that occurs when the blood glucose and ketones in
the blood are very high and the person becomes very dehydrated, often with nausea,
vomiting, abdominal pain, laboured breathing and unusual smelling breath (similar
to nail polish remover or acetone). The blood becomes too acid because of a build-up
of ketones and there is great loss of body salts and fluid. Ketoacidosis occurs when
high blood glucose levels and a lack of insulin are present for many hours due to
illness or missing insulin. Ketoacidosis requires urgent hospitalisation and treatment.
Untreated ketoacidosis can cause severe illness or death.

How to test for ketones


Testing for ketones in the blood
Meters are available that allow for measurement of ketones as well as glucose in the
blood. Measuring ketones in the blood has the advantage over urine testing in that it
gives an earlier and more accurate picture of the ketones in the body. This is because
it takes some time for ketones to be converted to the form that is measured in urine
and for these to be passed into the urine.
Measuring the blood ketones is a similar procedure to measuring blood glucose,
except a different strip is inserted into the machine. The machine will report the
amount of ketones (beta-hydroxybutyrate) in the blood as a number. Guidelines will
come with the machine to guide you as to the action required, depending on the
level. The following is a general guide:

Blood ketone reading (mmol/l): Less than 0.6 Negative or trace only
(beta—hydroxybutyrate)
0.6 to 1.5 Small to moderate ketones
Above 1.5 Moderate to large ketones
(the higher the number,
the more ketones)

Refer to the information below for how to respond if there are small, moderate or
large ketones in the blood or urine, depending on the BGL level. Extra insulin is
likely to be needed.

Testing for ketones in the urine


This is done using urine test strips, as follows:
1. Check the expiry date of the ketone test strips. Some brands of strips also measure
the amount of glucose in the urine, which will be high if the blood glucose has

94 Caring for diabetes in children and adolescents


10: Sick Days
been high. Out-of-date strips or strips that have not been stored
well-sealed may not work properly. If the strip does not read negative before
you use it, it is spoiled and should not be used.
2. Let some urine run over the test strip, by passing urine directly onto the strip or
collecting a small amount of urine in a container and dipping the strip.
3. After the time specified on the test strip bottle, compare the colour of the strip
with the chart on the side of the bottle. Timing is important to get the correct
reading.
4. The urine ketone reading will be either
Negative – no colour change
Trace – just a slight colour change (slightly pink)
Small (+, 1 mmol/l or 10 mg/dl also shown on bottle)
Moderate (++, 5 mmol/l or 50 mg/dl also shown on bottle), or
Large (+++, 15 mmol/l or 150 mg/dl also shown on bottle) – strong purple colour
Always be concerned when ketones are present – the more ketones there are, the
more cause there is for concern.

Checking the colour of a ketone strip against the chart on the bottle

When to test for ketones


Always check for ketones in the following circumstances:
• If your child is unwell and the BGL is > 15 mmol/l
• If your child is well:
• If using injections and the BGL remains persistently above 15 mmol/l over a
few hours of checking. If your child is well and has one BGL above
15 mmol/l, it is not necessary to check for ketones right away. Recheck the
BGL in about 2 hours and check for ketones then if the BGL remains above
15 mmol/l
• If using an insulin pump and BGL > 15 mmol/l, always check for ketones
without delay (refer to chapter 18)
When to re-test:
• Follow the table on page 98. In general, if ketones are present on the initial test
and BGL remains above 15 mmol/l, re-test for ketones in about 2 hours. Testing
for ketones more often than this is usually not helpful.

Caring for diabetes in children and adolescents 95


10: Sick Days

Guidelines for sick days


1. Take care of the underlying illness: Children often get minor illnesses, but with
any significant illness your doctor should be consulted for advice.
2. Relieve symptoms: Paracetamol or ibuprofen can be used to treat fever, headaches
or other discomfort. Your doctor may also advise other medications for specific
illnesses. Many medications for children are available in sugar-free formulations
(e.g., paracetamol, most antibiotics); however, even if they contain sugar the
amount is not sufficient to cause problems and the medication should be given
as prescribed.
3. Measure the blood glucose more frequently – every two hours initially, but every
hour if the blood glucose is low.
4. Check for ketones during any illness, especially if the blood glucose level is more
than 15 mmol/l. If any ketones are present, continue to check each two hours or
so for ketones until negative.
5. Drink more fluids:
If the blood glucose level is more than 8 mmol/l, drink water or sugar-free drinks.
If the blood glucose is less than 8 mmol/l, drink liquids containing carbohydrate
(e.g., fruit juice, normal soft drinks, icy poles, normal sweet jelly).
Give your child small drinks frequently, rather than large drinks occasionally.
Often there will be no appetite for food – don’t worry about this, but make sure
to keep up plenty of fluids to avoid dehydration.
As a guide try to get your child to drink half to one cup of fluid over each hour.
6. Do not omit or stop the usual doses of insulin: If blood glucose levels are low, you
may need to seek advice about whether to lower the usual doses. Sometimes in
this situation insulin doses may need to be reduced by 30 per cent or more.
7. Give extra insulin: If the blood glucose level is above 15 mmol/l and ketones are
present, extra rapid or short-acting insulin is needed . Sometimes extra insulin
will be needed if the BGL is 8-15 mmol/l and there are persistent ketones – see
the table in this chapter. Continue to check the blood glucose about every two
hours until the blood glucose falls and check for ketones every two hours or so
until negative.
8. Avoid strenuous exercise when unwell, especially if ketones are present.
9. When teenagers or young adults who predominantly look after their own diabetes
are unwell, parents should resume care and supervision, as the teenager may be
too unwell to make appropriate decisions. Extra support and care from all around
is helpful.

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10: Sick Days
If there is any uncertainty about what to do during a sick day, call your diabetes
doctor, educator or hospital for advice. You should certainly do this if:
• vomiting is frequent or persistent (more than two or three vomits may mean
hospital admission is needed, especially in young children)
• blood glucose levels cannot be kept above 4 mmol/l
• blood glucose levels cannot be kept down below 15 mmol/l after two extra doses
of insulin or unable to clear ketones
• your child is becoming more unwell or develops other symptoms (e.g., abdominal
pain, drowsy, confused, deep or heavy breathing)
• you are very worried or exhausted or do not know what to do next
• your child is very young.

Giving extra insulin during sick days


• Extra insulin is needed if the blood glucose level is greater than 15 mmol/l and
there are any ketones present in urine or blood tests. Don’t wait until the next
insulin dose is due – give an extra dose right away. Sometimes extra insulin will
be needed at a glucose level between 8–15 mmol/l during illness if there are
persistent ketones. The table later in this chapter guides you about this.
• Use rapid or short-acting insulin only for extra doses. Do not use long-acting
insulin for these extra sick day doses.
• Give an extra 5 per cent, 10 per cent or 20 per cent of the total daily dose of
insulin according to the table below. Use the smaller dose in the range first or if
you think your child is very sensitive to the rapid or short-acting insulin.
• Add up all insulin doses for a usual day and divide by ten to get the 10 per cent
figure, from which the others are easily calculated.
• Continue to check for ketones every 2 hours or so.
• If the blood glucose level is still not below 15 mmol/l after two to four hours,
repeat the extra insulin dose (unless the blood glucose level is clearly falling quite
quickly).
• If the blood glucose level remains above 15 mmol/l after two extra doses of
insulin, contact your diabetes doctor, educator or hospital.
• Insulin pump users will use correction doses through the pump if there are no
ketones or with a pen injection if ketones are present – specific details are given
in chapter 18.

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10: Sick Days

Guide to extra insulin doses and monitoring for sick days:

Ketones: none or minimal Ketones: small to moderate Ketones: moderate


Blood ketones less than Blood ketones 0.6 to Blood ketones more than
0.6 mmol/l 1.5 mmol/l 1.5 mmol/l
Urine: negative or trace Urine: + to ++ Urine: ++ to +++

BGL more than Give a 5% extra insulin Give a 5 to 10% extra Give a 10 to 20% extra
15 mmol/l dose. Check blood glucose insulin dose. Check blood insulin dose. Check blood
and ketones again in about glucose and ketones again glucose and ketones every
two hours in about two hours hour.

BGL 8 to 15 Re-check blood glucose in Re-check blood glucose Give a 10 % extra insulin
mmol/l two hours. May fall and ketones in two hours. dose. Check blood glucose
without extra insulin. If If persistently elevated, and ketones again in about
persistently elevated, give a 5 to 10% extra dose two hours
consider a 5 % extra dose of insulin
of insulin

BGL 4 to 8 No cause for concern. Ketones indicate Ketones indicate


mmol/l Check BGL again in 2 carbohydrate and insulin carbohydrate and insulin
hours. deficiency. Give extra deficiency. Give extra
glucose / carbohydrate to glucose / carbohydrate to
maintain or increase BGL. maintain or increase BGL.
Continue usual insulin Do not stop usual insulin
doses. Check glucose and doses and consider an
ketones in 2 hours. extra 5% insulin dose if
ketones not clearing.
Check glucose hourly and
ketones 2 hourly.

BGL less than Treat the hypo by giving Treat the hypo by giving Treat the hypo by giving
4 mmol/l sweet fluids/food and sweet fluids/food and sweet fluids/food and
ongoing carbohydrate to ongoing carbohydrate to ongoing carbohydrate to
maintain BGL. Check maintain BGL. Check maintain BGL. Check
BGL in 20 to 30 minutes. BGL in 20 to 30 minutes. BGL in 20 to 30 minutes.
Do not stop usual insulin Ketones indicate Ketones indicate
doses, but may need to be carbohydrate and insulin carbohydrate and insulin
lowered. Consider mini- deficiency. Continue to deficiency. Continue to
dose glucagon. Hospital give extra glucose / give extra glucose /
admission for IV fluids carbohydrate. Do not stop carbohydrate. Do not stop
may be needed if BGL usual insulin doses, but usual insulin doses, but
cannot be maintained. may need to be lowered. may need to be lowered.
Hospital admission for IV Hospital admission for IV
fluids may be needed if fluids may be needed if
BGL cannot be BGL cannot be
maintained and ketones maintained and ketones
cleared. cleared.

How do I decide how much extra insulin to give – 5 per cent, 10 per cent
or 20 per cent?
Use the table above as a guide. In children under five years or those who seem very
sensitive to short-acting insulin or are at the milder end of the ranges in the table,
use the smaller dose in the range shown in the table first. You will get a feel for extra
doses that your child needs for illness after you have dealt with some. If you are not
sure what to do, phone your doctor, educator or hospital for advice.

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10: Sick Days
Example of extra dose calculation
Usual daily doses:
Breakfast: NovoRapid 6 units, Levemir 14 units
Predinner: NovoRapid 4 units
Pre-bed: Levemir 6 units
Total daily dose = 30 units
A 10% extra dose would be 3 units of NovoRapid (rapid-acting)
i.e., 10% of the usual total daily dose
A 20% extra dose would be 6 units of NovoRapid (rapid-acting)

Illnesses with low blood glucose levels


As discussed above, many illnesses will raise blood glucose levels, even if the appetite
is less than usual. This is the most common situation. Some illnesses, however, cause
blood glucose levels to be low and these are usually gastroenteritis illnesses (tummy
upsets) where nausea, vomiting and diarrhoea are the main features. Blood glucose
levels are low because there is less carbohydrate intake and the food that is eaten may
be absorbed poorly. There may be ketones (usually small amounts) in the blood or
urine in this situation – these indicate that supplies of glucose are running low in the
body. The body still needs insulin in these situations as well as extra glucose from
carbohydrate to correct the situation.
Electrolyte replacement solutions (e.g., Gastrolyte or Hydralyte) can be used and help
to replace fluid and electrolyte losses. The solutions contain relatively small amounts
of glucose, usually around 15 g or one exchange per litre, so additional carbohydrate
may be needed.
In these situations, still follow the sick day guidelines as above. In some cases where
symptoms persist, there is dehydration or the blood glucose level cannot be kept
above 4 mmol/l, hospital admission may be required.

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10: Sick Days

If things are improving but the blood glucose levels are tending to stay low, insulin
doses should be reduced. Do not stop the insulin, but consider reducing insulin
doses by 30 per cent or sometimes more. A reduced insulin dose may be required for
a number of days as it takes some time for the bowel to recover. Insulin doses may be
difficult to judge in this situation, and if in any doubt, contact your diabetes team for
advice.

Mini-dose glucagon
Glucagon is a medication that is usually used for emergency treatment of severe
hypoglycaemia in diabetes when the person is unable to safely eat or drink or is
unconscious or fitting. Glucagon raises the BGL, mainly by releasing glucose from
the liver and in such situations can be life-saving. All families must have glucagon at
home and know how to use it.
Sometimes children with diabetes experience illnesses which are not severe, yet their
BGLs are low (under 4 mmol/l) and they are reluctant to eat or drink enough to raise
the BGLs up to satisfactory levels. This is especially common in young children and
toddlers. While this is not classed as severe hypoglycemia it could become so and if
BGLs cannot be raised it may mean a trip to hospital for IV fluids.
The mini-dose glucagon protocol has been developed as a way of raising BGLs in
such circumstances until the child is eating or drinking better. It can help avoid an
admission to hospital. It can be used safely and effectively provided that the guidelines
are followed carefully. Mini-dose glucagon should not cause vomiting.

1. Is mini- dose glucagon suitable for my situation ?

You MUST NOT use the mini-dose glucagon protocol if :


• Severe hypoglycemia – decreased consciousness or fitting – a full dose of
glucagon is needed urgently as described in chapter 8.
• more than mildly unwell or has other symptoms, e.g., tummy pain
• There is persistent vomiting
• You are very worried and do not want to continue to manage at home
If you are not sure whether it is appropriate to use the mini-dose glucagon protocol
or have questions, contact your diabetes educator, doctor or after-hours diabetes
service.

2. Mixing up the glucagon

Glucagon (Glucagen Hypokit) is mixed up as per the standard recommendations.


All the fluid in the syringe is pushed into the bottle of powder. The syringe is then
withdrawn and the bottle is gently swirled to dissolve the powder. Do not shake the
bottle.

3. Drawing up the correct dose into an insulin syringe:

An insulin syringe is used to draw up the glucagon dose.

Draw up 1 unit of the glucagon mixture on the insulin syringe per year
of age.
e.g., for a 10 year old child, draw up 10 units on the syringe.
If your child is less than 2 years, use 2 units as the dose.
If your child is over 15 years, use a maximum dose of 15 units.

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10: Sick Days
4. Giving the mini-dose glucagon injection

Give the injection as you would an insulin injection, into any site that you would
normally use.

5. Monitoring the response

The BGL should be re-checked in 30 minutes. If the BGL has not risen to normal
levels after 30 minutes, give another dose of glucagon of double the initial dose.
If there is still no response after 30 minutes, then you will need to bring your
child to the hospital or call an ambulance.
If the BGL rises satisfactorily, continue to encourage suitable foods and fluids to help
keep the BGL up. Monitor the BGL frequently until stable.

6. If the BGL falls again later

Another dose can be given, with BGL monitoring as above. If more than 2 doses are
needed on the same day, then you should contact your diabetes team or come to
hospital. The glucagon solution is stable for 24 hours in the refrigerator.

7. Lowering insulin doses

Lower insulin doses are usually needed during these times, with dose reductions up
to 30–50% often needed. Both short-acting and long-acting insulins will be reduced,
but often more so the short-acting. Call your doctor or educator if you need advice.

8. If a severe hypo develops

You must give a full dose of glucagon and call the ambulance. A full dose of glucagon
is 0.5 mls (50 units on an insulin syringe) if less than 6 years old or 1 ml (100 units
on the insulin syringe) if older than 6 years . The dose can also be given by using a
second spare glucagon kit.
If using the mini-dose glucagon protocol, make sure that you always keep at least
0.5 mls of glucagon in case you need to treat a severe hypo. 0.5 mls will generally be
enough for this situation in an older child or teenager.

9. Glucagon supplies

Remember to replace your glucagon after using it.

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10: Sick Days

Foods and fluids for sick days


When the blood glucose level is above 8 mmol/l:
Use low calorie or sugar-free fluids, such as:
• water
• diet cordial or diet soft drink (shake bubbles out or allow to go flat)
• diet jelly

When the blood glucose is below 8 mmol/l:


Carbohydrate-containing foods or fluids will be required. The following list gives
some foods and fluids which may be useful during illnesses. Any carbohydrate-
containing foods or fluids may be used, but it is a matter of trying to use foods
and fluids which your child will tolerate while sick.

Food Jelly beans Drink Ordinary soft drink


Toast or bread Juice
Plain sweet biscuits Milk, with added chocolate powder
Ice-cream, Icy Poles Tea or water with honey or sugar
Yoghurt
Sweet jelly
Banana
Orange

These fluids are not generally suitable for children with significant dehydration.
Any child who may be becoming dehydrated should be assessed at hospital and
may require admission and an intravenous drip.

Surgery and anaesthetics


Like any child, a child with diabetes may require surgery or a procedure with an
anaesthetic at some time in their life. These can be performed safely, provided that
appropriate precautions are taken and the diabetes is cared for during this period by
staff experienced in childhood diabetes. Not all hospitals have this expertise.
You should always discuss any planned procedures with your diabetes specialist who
will be able to advise about appropriate arrangements. Your surgeon will look after
the operation and surgical care but you need the involvement of your diabetes team
to look after the diabetes.
Even minor procedures will require admission to hospital, although sometimes the
stay can be for only one day. Surgery is best performed first thing in the morning. An
intravenous drip containing glucose is usually required to cover the period before,
during and after the operation where your child cannot eat or drink.
For minor procedures, insulin will be given by injection or a pump will continue to
be used, with doses adjusted as needed. For major procedures or emergencies, an
insulin infusion will be given through an intravenous drip. More frequent blood
glucose monitoring is required and the blood glucose levels are likely to be more
variable. The aim is to avoid major hypos, prolonged highs, dehydration or other
complications.

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10: Sick Days
If you have any doubts about arrangements for surgery or a procedure, you should
contact your diabetes team without delay.

Common questions and answers

When my son gets ear infections and has a fever, he eats much
? less. Should I lower his insulin doses?
Illnesses with fever and infection often make the blood glucose levels
higher than normal, even if the child is not eating well. This is because
of glucose output from the liver, which is exaggerated when the body is
stressed and lacking in insulin. You should check the blood glucose
levels more often and continue the usual doses of insulin. Sometimes
extra insulin will be needed. Some illnesses make the blood glucose
levels lower, especially vomiting and diarrhoea. If this happens, less
insulin may be needed – monitor more often and check with your doctor
or educator if unsure.

How do extra fluids help when my child is sick?


? High blood glucose levels can cause extra fluid losses through passing
more urine. Extra fluid helps replace this and helps the body clear
ketones.

My daughter has only had diabetes for three months and this

? is her first illness since the diagnosis. We don’t feel confident


about giving extra inulin. What should we do?
It is natural that you will feel anxious and uncertain about dealing
with sick days, especially at first. Use the guidelines in this section.
If worried or unsure, call your doctor, educator or after-hours diabetes
service who will guide you; this can usually be done over the telephone.

If my child is sick and does not feel like eating, what can I do?
? Measure the blood glucose level more often. Try to give carbohydrate-
containing fluids or foods that are easy to swallow (e.g., jelly, custard,
ice-cream). During sick days, if the blood glucose level is above
8 mmol/l, low calorie or sugar-free fluids should be used. If the blood
glucose level is below 8 mmol/l give carbohydrate-containing fluids
or food.

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10: Sick Days

Do children with diabetes get ketones whenever the blood

? glucose is high?
No. If the child is well and the blood glucose is high from eating too
much carbohydrate or perhaps because of mood or emotion, then
usually there will be no ketones. It is only when there is not enough
insulin in the body that ketones develop, and this is more likely at times
of illness. Ketones are likely to develop if the BGL is high for more than
a few hours.

My seven-year-old daughter with diabetes needs to have her


? tonsils removed. I have been advised that this can be done in our
local private hospital, even though they do not have a children’s
section. What should I do?
Surgery on children with diabetes should only be performed in hospitals
in which there is experience in looking after children with diabetes at
these times. Usually this will be a major children’s hospital or general
hospital with a paediatric section. Your diabetes specialist needs to be
involved in the planning and during the time in hospital. Contact your
diabetes team for further advice about how you should proceed.

104 Caring for diabetes in children and adolescents


11: Exercise and Sports
Chapter 11 Exercise and Sports

Key Points
u E
 xercise usually lowers blood glucose levels, but sometimes they
rise for a short time during or just after strenuous exercise
u M
 easure the blood glucose before exercise and frequently during
any prolonged exercise
u F or exercise, there may be a need to lower the insulin doses, eat
extra carbohydrate or both
u D
 elayed hypos can be a common problem after strenuous or
prolonged exercise – measure the blood glucose, lower the insulin
and eat extra carbohydrate after exercise if needed
u Planning ahead helps minimise any problems

Benefits of exercise
Exercise is very beneficial and is encouraged for all children. With appropriate
knowledge and precautions, exercise and sports can be undertaken without major
concerns in children and adolescents with diabetes. There are a number of
professional sports people with diabetes.
Chapter
Exercise:
• helps keep the body in good shape and at an ideal weight 11
• helps people feel well and happy and is an important social activity
• helps keep the heart rate and blood pressure lower
• gives you more energy
• strengthens muscles
• helps you get good control of diabetes.
In infants and young children, general activities and play provide adequate exercise.
As children grow older they are increasingly active and will often wish to become
involved in group or individual sports. Older children and adolescents who have a
tendency to be inactive and do not wish to play sports should be encouraged to
incorporate some regular exercise into their weekly routine (e.g., walking, swimming).
Children with diabetes should not be limited in their activities and should be
encouraged to participate in sports and physical activities. Learning sports when you
are young gives you skills that are much harder to develop as an adult.

Exercise and diabetes


The following points are important to know about exercise and diabetes:
• Exercise usually lowers the blood glucose level (during and after exercise).
This occurs because the exercising muscles use more glucose as fuel, but also
because exercise makes the body more sensitive to insulin (i.e., the same amount
of insulin has a greater effect). Lowering of blood glucose levels can occur during
the exercise and for some time after, often up to 12 to 16 hours.

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11: Exercise and Sports

• Sometimes exercise makes the blood glucose level go up. This can happen during
or just after exercise in some people because of the effect of some of the body’s
other hormones which rise during exercise (e.g., adrenaline) and increase glucose
output from the liver. Usually later the blood glucose will fall because of the
reasons outlined above. Exercise is also likely to raise the blood glucose level if
people exercise when unwell. Strenuous exercise should be avoided if unwell – if
the blood glucose level is above 15 mmol/l or if there are ketones present.
• Exercise affects everyone a little differently. Because everyone is different in the
way their body will respond to a certain activity, learning your child’s own
response to each type of exercise by observation and extra BGL monitoring will
help avoid hypoglycaemia.

Guidelines for exercise and diabetes


Before exercise
• Type of exercise: Think about how long and how strenuous the exercise will be.
Short or low level exercise may require no adjustment, whereas prolonged or
vigorous activity will require reductions in insulin and/or extra carbohydrate.
• Injection sites: Insulin is absorbed more quickly from parts of the body that are
exercising (e.g., arms and legs). The abdomen (tummy) is the best place to have
insulin injections before exercise or as a second choice the buttocks.
• Supervision: Children should be supervised by or exercise with someone who
knows that they have diabetes and could help if there is a problem. It is important
to let people (such as teacher, coach, Scout leader) know that your child has
diabetes. Provide them with simple information and guidelines for what to do if
there is a problem, which is most likely to be a hypo. Food or drink to treat
hypoglycaemia needs to be available to those supervising.
• Dangerous sports: Some sports or activities are not recommended for people with
diabetes or have to be approached with extreme caution. These are mainly sports
which are solo or unsupervised water or air sports or any other sports where
recognising or treating a hypo could be difficult.

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11: Exercise and Sports
People with diabetes should not do solo or unsupervised sports – a companion
who knows about diabetes and hypo treatment should always be present.
Sports which are not recommended for people with diabetes include motor
racing, rock climbing, scuba diving, hang-gliding, solo flying. Some potentially
hazardous sports (e.g., surfing, sailing) are possible with good planning.
• Measure the blood glucose: It is very useful to measure the blood glucose level
before exercise. This helps to decide about reducing insulin or the need for extra
carbohydrate before or during the exercise.
During periods of prolonged physical activity (e.g., a day of bushwalking or a
swimming carnival) the blood glucose should be measured more frequently than
usual. It is also important to measure blood glucose levels after exercise because
of the possibility of delayed hypos.

How to adjust for exercise


Most forms of activity lasting more than 30 minutes are likely to need consideration
of adjustment to insulin dosing or food. This can depend on many factors, such as
usual activity patterns, intensity of exercise, when you are exercising, type of insulin
plan and recent insulin doses.
Adjustment for exercise will require thinking about:
1. Reduction in insulin doses acting at the time, and sometimes after exercise
2. Additional carbohydrate before and during the exercise
3. A combination of both insulin reduction and additional carbohydrate
For planned exercise, particularly in older children, insulin reduction is an
appropriate first step if possible in the individual’s insulin plan. For unplanned
exercise and younger children, a common first step is to give some extra carbohydrate.
Prolonged exercise will usually require a combination of insulin reduction and extra
carbohydrate.

Insulin adjustment for exercise


Insulin reduction is often the appropriate first response to exercise. It can be
combined with having extra carbohydrate if needed. Reasons for reducing insulin
doses as a first step, if possible, include:
• Not wishing to eat or drink too much before sport
• Extra carbohydrate may not be enough to avoid hypos.
• Older children and teenagers are likely to exercise more intensely
• Extra food with exercise can contribute to unnecessary extra calories and excess
weight gain.
• Prolonged exercise or high activity periods (e.g., sports carnival days or school
camps).
However insulin reduction as a first step is not practical in all insulin plans, especially
when extra exercise is spontaneous or unplanned. e.g., it may not be possible to
predict that a toddler will be very active after lunch; the usual morning insulin dose
may have been given and if there is no lunch time insulin dose to adjust, giving extra
carbohydrate is the only way of compensating.
To adjust insulin for exercise it is necessary to have an understanding of which insulin
doses are acting mostly during and after the exercise (see section 5). For those on an
insulin pump, please refer to chapter 18 for specific details about adjustments.

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11: Exercise and Sports

The dose of insulin which is acting at the time of the exercise (especially rapid or
short-acting) may need to be reduced by between 20 and 50 per cent. Discuss this
with your diabetes team if unsure. Usually it is appropriate to reduce the rapid or
short-acting insulin before exercise more than the long-acting insulin.
For some children it is necessary to have different doses of insulin on different days
depending on their activity levels (e.g., lower dose on weekends with sporting
activities). Extra monitoring and experimenting with dose adjustment will help work
out what works best for your child. Insulin doses may also need to be reduced after
exercise (see later). Your educator or doctor will also be able to guide you.
During very active periods such as school camps or diabetes camps insulin doses may
need to be decreased by around 20-30 per cent for the duration. This depends on
how active the camp is compared to your child’s normal routine.

Extra carbohydrate before and during exercise


If you wish to adjust by taking extra carbohydrate, the following table is a general
guide to the extra carbohydrate which should be taken before and during exercise.
You may find that you modify this a little for your child after you gain some idea of
their pattern with particular types of activity. If insulin is also being reduced, the extra
amount of carbohydrate needed will be less. Advice for insulin pump users is based
on the same principles, but is covered in more detail in chapter 18.
It is usually best to have the extra carbohydrate 20 to 30 minutes before exercise.
The extra amounts are in addition to the carbohydrate your child usually has during
the day.

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11: Exercise and Sports
Exercise Blood glucose level Extra carbohydrate*
before - use extra exchanges
(15g carbs) or serves according
to the system you follow

Short duration Less than 7 mmol/l 1 exchange before


(less than 30 minutes)
or low intensity exercise More than 7 mmol/l No extra necessary
(e.g., slow walking, yoga)

Moderate exercise Less than 7 mmol/l 1-1.5 exchange before;


(e.g., power walking, 1 exchange per 30-40 minutes
aerobics, swimming, of exercise
tennis, jogging)

7-12 mmol/l 1 exchange before; 1 exchange


per 30-40 minutes of exercise

Above 12 mmol/l May not need extra before;


1 exchange per 30-40 minutes
of exercise
Strenuous exercise Less than 7 mmol/l 1-2 exchanges before;
(e.g., basketball, 1 exchange per 20-30 minutes
hockey,football, of exercise
strenuous cycling)

7-12 mmol/l 1 exchange before; 1 exchange


per 20-30 minutes of exercise

Above 12 mmol/l May not need extra before;


1 exchange per 20-30 minutes
of exercise
Above 15 mmol/l Strenuous exercise should be
avoided if ketones are present
– give a correction dose of
insulin first

* Note: less carbohydrate than this may be needed if insulin has been reduced before
and during exercise
Another rule of thumb is that young adults require 1 to 1.5 grams of carbohydrate
per kg of body weight each hour during strenuous exercise, unless they have reduced
insulin beforehand.

Caring for diabetes in children and adolescents 109


11: Exercise and Sports

Ideas for extra carbohydrate before and during exercise

Many carbohydrate foods are suitable before and during exercise, but here are some
popular ones:
• juice
• milk
• sports drinks
• yoghurt
• fruit
• fruit bar or muesli bar
• biscuits
• small chocolate bar.

Delayed hypoglycaemia after exercise


Delayed hypoglycaemia is common for up to 12-16 hours after significant exercise.
This is because the muscles can continue to use more glucose than usual and the
body is more sensitive to insulin after exercise. If there has been prolonged or intense
exercise throughout the day then delayed hypos are very likely. These can be prevented
by insulin reduction, extra carbohydrate and extra blood glucose testing.
Test the blood glucose level before bed after significant exercise. An extra one or two
carbohydrate exchanges should be given if the blood glucose is less than 6 mmol/l at
bed time. It may also be necessary to check the blood glucose level later in the evening
or overnight.
In some children it is necessary to reduce the evening insulin after exercise to avoid
night-time hypos especially where the exercise has been vigorous or prolonged.
Again, the reduction is usually in the range of 10-30 per cent but only extra
monitoring will help work out what is best for your child.

Exercise adjustment examples


The following are examples of some common adjustments. Since exercise and
response to it will vary so much in different children, only extra monitoring and trial
and error will determine what works best for your child. Your educator and doctor
are experienced in advising about these adjustments if you need help.

Example 1

Troy is an active ten-year-old boy. During the winter he has football training from
4 to 6 pm on Tuesday evenings and plays football on Saturday mornings from
10 to 11 am.
Usual insulin doses:
Before breakfast: Levemir 12 units, Actrapid 6 units
Before main evening meal: NovoRapid 4 units
Before bed: Levemir 7 units
Adjustment:
After extra monitoring and adjusting the following plan was worked out:
Before football training: eats usual afternoon tea plus one or two extra exchanges
depending on BGL (not practical to reduce morning insulin here, as his BGLs would
run high during the day)
Has orange juice half-way through training session.
Has pre-dinner insulin reduced to NovoRapid 2 units and reduces pre-bed Levemir
to 5 units.

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11: Exercise and Sports
Eats extra exchange at supper if BGL is less than 6 mmol/l.
On Saturday mornings: has insulin reduced to Levemir 10 units, Actrapid 4 units.
Eats morning tea early just before game. Has orange juice at half-time.

Example 2

Sarah is a three-year-old girl who attends preschool two mornings per week. She is
tending to have low BGLs at preschool in the late morning because she is more active
than at home.
Adjustment:
It was found that she is quite hungry at preschool and giving some extra carbohydrate
at preschool solved the problem. If this had not been successful a reduction in the
morning insulin dose on those days would need to be considered.

Example 3

Aysha is a 14-year-old girl who wishes to attend a dance party on Saturday night from
7 pm to 10.30 pm. She is a keen and vigorous dancer. She is on four injections a day:
Apidra:
before breakfast 12 units
before lunch 10 units
before dinner 14 units
Lantus:
before bed 28 units
Adjustment:
Morning and lunch doses remain the same.
The pre-dinner Apidra (rapid-acting) is reduced to 10 units and dinner is eaten as
usual. Aysha makes sure to have one or two exchanges of carbohydrate per hour
during the party (e.g., potato chips, orange juice, cake). On returning home she
checks her blood glucose and would have extra carbohydrate if her BGL is less than
6 mmol/l. She reduces her pre-bed Lantus (long-acting) to 23 units. Dad usually
checks her blood glucose level at 2-3 am after a big night out.

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11: Exercise and Sports

When is it unwise to exercise?


People with diabetes should avoid exercise if:
• unwell
• The blood glucose level is high (above 15 mmol/l) and ketones are present.
Exercise at this time can raise the blood glucose and ketone levels and make your
child feel more unwell. More insulin is needed at this time, not exercise. Exercise
will not lower the blood glucose if the body is lacking insulin.
If the BGL is above 15 mmol/l, but the person is well and ketones are negative, mild
or moderate exercise is fine (but not strenuous) and will help bring the glucose down.
However, it is important to think about why the glucose is high and whether extra
insulin might be needed.

Associated video resource for Chapter 11:


WWYCD (Wicked) – Your Get-Up-and-Go Guide to Living with
Type 1 Diabetes
ERC Media, Educational Resource Centre, Royal Children’s Hospital,
Melbourne, 2009.
WWYCD clearly lays out the benefits of maintaining regular exercise and, when
motivation is low, encourages young people to consult the one person who can
truly assist them to develop and maintain a healthy fitness regime for life.
View via the link at www.kidsdiabetes.org.au

112 Caring for diabetes in children and adolescents


11: Exercise and Sports
Common questions and answers

Our son tends to have hypos in the night after his athletics days,
? even though we give him extra carbohydrate. What can we do?
Delayed hypos after exercise are common and exercise can cause blood
glucose levels to be lower for some 12 to 16 hours afterwards. Lowering
the insulin on these very active days will help – lower the evening dose,
or both morning and evening doses, depending on the pattern.

My 15-year-old son is a keen surfer. I worry about him having a


? hypo when he is out in the water. What should I do?
Activities like surfing are potentially hazardous and require extra
precautions. Always check the blood glucose level before going into the
water and eat some extra carbohydrate (see the guidelines in this section).
Some children will lower their insulin doses if planning a very active
time. He should always surf with a buddy who knows he has diabetes
and what to do for a hypo. He should come in to the beach every
30 minutes or so for extra carbohydrate (one to two exchanges). As an
extra precaution, a tube of glucose gel can be tucked into the wetsuit or
board shorts in case of an unexpected hypo.

My daughter has a school camp which is going to be very active.


? What should we do about her insulin doses?
Plan ahead by looking at the activity program and how active it will be.
Also ask to see the menus to check for carbohydrate content and number
of meals and snacks provided. If the camp is much more active than your
child’s usual routine, insulin doses often have to be reduced by 20 to 30
per cent overall. Extra carbohydrate will also be needed. Consult your
diabetes doctor or educator before the camp if uncertain.

What are some good extra carbohydrates for before or during

? exercise?
Many carbohydrate foods are suitable. Some popular ones are juice,
milk, sports drinks, yoghurt, fruit, fruit bars, muesli bars, biscuits or
small chocolate bars. Higher energy foods can be used at these times
since the energy is burned up and does not raise the blood glucose levels
so much.

Caring for diabetes in children and adolescents 113


11: Exercise and Sports

My daughter is sometimes hypo after netball training, but at

? competition matches her blood glucose levels are often high.


Why is this?
Sometimes the stress and excitement of the competition will make the
blood glucose high through production of hormones like adrenaline
which cause glucose release from the liver. If this affects performance,
ask your doctor or educator about some possible solutions.

My son had a BGL of 18 mmol/l immediately after basketball


? last week. Should we have given extra insulin then?
No. High intensity exercise can push the BGL up temporarily during the
exercise and for a short period after. This is because of a ‘stress hormone’
response. Usually the BGL will settle with rest and some fluids. Giving
extra insulin at this time is likely to cause a hypo. Check the BGL an
hour or so later to make sure it is settling.

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12: Insulin adjustment
Chapter 12 Insulin adjustment

Key Points
u H
 ow you adjust insulin will depend on the types of insulin being
used and the number of injections each day

u Insulin doses often need adjustment. General principles are:


v Pattern adjustment: look for patterns that indicate a need to
adjust usual insulin doses because of high or low glucose levels
at certain times over a few days or longer periods?
Look at this regularly
v Day to day adjustment (flexible daily adjustment): if you are
using a flexible system, think whether you need to adjust a dose
or doses now or today to take into account a variation in
carbohydrate intake or activity? Many people on multiple daily
injections make these flexible decisions on a daily basis with
their pre-meal injections
v Corrections: think about the need for a correction adjustment,
especially for correcting a BGL that is too high now
u If hypos are occurring frequently, don’t delay adjustments
Chapter
u S eek help from your diabetes educator or doctor if you are not
sure what to do or your adjustments are not working
12
u P
 ump users also need to adjust insulin, but details are different –
see chapter 18

All people with diabetes need adjustment of their insulin over time and also often
from day to day. At first this may seem a little confusing, but you will soon find that
it falls into place and you will get a good feel for how to adjust your child’s doses.
Older children and teenagers will also start to think about their own adjustment and
can become skilled at it. It is very rewarding and will give you a sense of control to be
able to adjust the insulin doses as needed.
In some situations and for some children, adjustment remains very difficult, requiring
more frequent contact with your diabetes educator or doctor. Shortly after diagnosis,
very frequent adjustments need to be made and these are usually made by regular
contact with your diabetes educator or diabetes doctor.

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12: Insulin adjustment

The details of adjustments for injections and pumps are quite different; this chapter
discusses injections for those on injections. Adjustments for pumps are dealt with in
chapter 18.

Why does insulin need adjusting?


Insulin doses will need adjusting gradually over time and can often need adjusting
day to day. There are many reasons why insulin may need adjusting, including the
following:
• As children enter a honeymoon phase shortly after diagnosis, insulin
doses decrease
• As children grow, they need more insulin to maintain good control
• Insulin requirements increase more with puberty and the associated
growth spurt
• Changes in activity levels from day to day
• Variation in appetite and food intake from day to day
• Change of circumstances, such as holidays, new school, camp etc.
• Sickness (see chapter 10 ‘Sick days’)

Principles of insulin adjustment


It is useful to think of three main types of insulin adjustments and think of them in
this order:
1. Pattern adjustments to usual doses:
These are changes to regular doses based on patterns in blood glucose readings
over several days or longer. This may occur:
• when coming out of a honeymoon phase
• as the child grows and especially as they have their growth spurt with
puberty or reach the end of puberty
• when the child has a general change in activity levels.

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12: Insulin adjustment
2. Day to day adjustments (flexible daily or ‘thinking ahead’ adjustments):
These are adjustments to some doses based on what is going to happen that day.
Examples of this are:
• reducing a dose or doses for sporting activity
• reducing an evening dose of insulin after a very active day to avoid delayed
hypos
• adjusting a dose to plan for eating more or less at a meal.

3. Corrections (“Fix-up adjustments”):


This is adjusting a dose or giving an extra dose to correct or ‘fix up’ a blood
glucose reading that is unexpectedly high. For example:
• giving extra rapid or short-acting insulin when the blood glucose level is
found to be high before a meal
• giving extra doses for high readings between meals
• adjusting for sick days.

More detail on these three types of adjustment is given in the following sections.
General points are:
• Insulin adjustment requires a knowledge of the types of insulin your child is on,
particularly when they start to work and how long they work for (see chapter 5
‘Insulin treatment’).
• Overall insulin adjustments are generally based on the recognition of blood
glucose patterns over several days, so enough blood glucose readings need to be
done to allow this.
• Cautious adjustment steps are made in insulin doses until blood glucose levels in
the target range are reached.
• At times of instability or illness it is necessary to do extra blood glucose readings
to guide adjustment.
• Recurring hypoglycaemia requires thinking about insulin doses without delay and
adjustment if needed.
• Frequent dose changes may be necessary when insulin needs are changing rapidly,
in which case your diabetes educator or doctor should be aware and able to help.
• Increasingly, modern insulin plans incorporate flexibile dose adjustments on a
day-to-day basis to adjust for activity and exercise; this is most suited to multiple
daily injection plans but can be used to some extent in most plans.

Because insulin adjustment differs significantly between different insulin plans,


the next section is divided into:
• Adjustment for those on 2 or 3 injection per day plans, and
• Adjustment for those on multiple daily injections.

Guidelines for insulin adjustment on 2 or 3


injections per day:
As outlined in chapter 5, injection plans that have two or three injection times per
day can suit many children. Such plans are more commonly used in younger children
and where it is impractical to have a lunch-time injection. Often children evolve from
such plans to multiple daily injections or pump therapy later on.

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12: Insulin adjustment

The major difference in these insulin plans, compared to multiple daily injection
(MDI plans), is that there are less insulin injections that can be adjusted each day and
specifically less opportunity for adjusting insulin doses before meals.
For children and adolescents on 2 or 3 injection per day plans:
• The insulin plan involves long-acting insulin being given once or twice daily
(morning or evening or both), with rapid or short acting insulin being given
before breakfast and at afternoon tea or dinner
• Insulin doses are set and adjusted to balance with their carbohydrate intake
• Carbohydrates are counted according to a pre-set meal plan that suits their
nutritional needs and appetite; therefore they tend to have fairly similar amounts
of carbohydrate (exchanges) for their various meals and snacks from day to day, in
order to balance with the insulin. Usually a pattern of 3 main meals (breakfast,
lunch and dinner) and 2 or 3 snacks (morning tea, afternoon tea and sometimes
supper) suits well for any age with this pattern.
• Overall adjustments need to be made based on patterns over several days or longer
• There is some scope for day to day adjustment to suit the circumstances of the day
(e.g., variation in appetite and exercise and correction of high BGLs), but this is
much more limited than for those on multiple daily injections.

1. Overall adjustment to usual doses (pattern adjustments)


1. Look for a pattern in BGL levels over a few days or longer (e.g., high levels before
breakfast). Three days of levels above the target range or two days of levels below
the target range at the same time of day should make you think about the need
for adjustment.
2. Identify the insulin that is acting to regulate BGL levels at this time of day
(e.g., the pre-breakfast level is mostly regulated by the previous evening’s
long-acting insulin).
Adjust the appropriate insulin (see below for a guide on how much to adjust). In
general, adjust only one insulin at a time. Adjusting more than one at a time can
be confusing.
Wait a few days to assess the outcome of the adjustment before making further
changes.

Exceptions to these general guidelines are:


• Hypoglycaemia (especially if severe) or periods of increased activity or sick days
may require more rapid or frequent adjustment.
• Where your doctor or educator advises more frequent changes.

Which insulin dose to adjust?


Here we show which doses should be adjusted for children on examples of a
2 injection per day pattern and a 3 injection per day pattern

Example of a child receiving three injections per day:


• combination short and long acting insulin before breakfast
• short acting insulin at afternoon tea
• long acting insulin at bed

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12: Insulin adjustment
If blood glucose readings show a
Dose of insulin to increase / decrease:
high / low pattern over several days at:

Before breakfast or overnight Evening long-acting insulin

Before morning tea or lunch Morning short-acting insulin or


sometimes morning long-acting insulin

Before dinner Afternoon tea short-acting insulin or


sometimes morning long-acting insulin

Before supper or bed Afternoon short-acting insulin

Example of a child receiving two injections per day:


• combination short and long acting insulin before breakfast and before dinner

If blood glucose readings show a


Dose of insulin to increase / decrease:
high / low pattern over several days at:

Before breakfast or overnight Evening long-acting insulin

Before morning tea or lunch Morning short-acting insulin or


sometimes morning long-acting insulin

Before dinner Morning long-acting insulin

Before supper or bed Evening short-acting insulin

By how much should doses be adjusted?


Insulin adjustment is made in steps based on blood glucose monitoring.
The amount by which the dose is changed depends on the current dose.
For example:
• if on 4 units of Actrapid, a 1 unit increase is a 25 per cent increase
• if on 20 units of Actrapid, a 1 unit increase is only a 5 per cent increase.
Doses are usually adjusted by about 10 per cent of the current dose. If you are unsure,
make smaller cautious changes, waiting for several days of blood glucose readings to
decide on further adjustment.
Remember that during periods of insulin adjustment more frequent BGLs are very
helpful (e.g., four to six per day or sometimes more).

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12: Insulin adjustment

General rules of thumb for adjusting insulin doses:

Dose to be adjusted Adjust by

10 units or less 1 unit. In some children on doses of less than


5 units, 0.5 unit changes are often used

10-20 units 1-2 units

20-30 units 2 units

More than 30 units 2-4 units

Pens are available that allow half-unit adjustments and, with care, half-unit
increments can also be used with syringes.

2. Day to day adjustments (flexible daily adjustments)


These are changes to some doses based on what is going to happen that day. If you
can anticipate that your child’s insulin needs will be more or less than usual on a
certain day, then making an adjustment is likely to reduce the chance of highs or lows
during the day. Some of these situations are:
• Adjustment for sports and activities:
o This is also covered in chapter 11. Extra activity or sport usually requires a
reduction in insulin doses, extra carbohydrate or both. Which insulin doses
are lowered will depend on the time of the day the sport is played and which
insulins are mainly acting then. For example, in a child on a 2 or 3 injection
per day plan, less short-acting insulin might be given in the morning on days
when there is planned physical exercise at school at 9am.
o For days when the activity levels will be continually high (e.g., athletics
carnival, active camp, bushwalking) all doses may need to be lowered (short
and long-acting insulins) and this is usually a reduction by 10 to 30 per cent,
depending on the individual. Remember also after very high energy days to
reduce the night time dose of insulin to avoid delayed hypos overnight.

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12: Insulin adjustment
• Insulin adjustments for meals:
Many younger children eat similar amounts of carbohydrate at similar times of
day. This particularly suits the routines of younger children and insulin adjustment
before meals often does not need consideration. However, since there are usually
2 doses of rapid or short-acting insulin each day which coincide with meals or
snacks, these can be adjusted if need be to cope with more or less carbohydrate
intake if that can be predicted.
For example, you may know that your child always eats more and ends up with
a high blood glucose level after eating pizza for dinner. Therefore, you may
find that it helps to increase the rapid-acting insulin dose before dinner on
those days to give a better BGL later in the evening.
• Correction doses:
In a similar way, if BGL is found to be above the target range when a rapid or
short-acting insulin dose is due, it is reasonable to increase this dose a little to
help the BGL return to the target range. This is called a correction dose.
If you find that you are needing to make corrections nearly every day, this suggests
that overall doses may need increasing (see pattern adjustments above).
• Adjustment for sick days:
This is covered in detail in chapter 10. Sick days can require dose increases if
blood glucose levels are high and ketones are present or dose reductions if blood
glucose levels are staying too low.

Guidelines for insulin adjustment for multiple daily


injections:
Multiple daily injection (MDI) plans are now widely used, which include one or two
injections daily of a long-acting insulin and an injection of rapid or short-acting
insulin before each main meal. In chapters 5 and 6, different ways of applying and
adjusting multiple daily injections plans and carbohydrate counting were outlined,
These are discussed here in further detail.
Three methods are in common use:

1. Conventional MDI with consistent carbohydrate intake


In this pattern, a person has fairly consistent carbohydrate intake on a day to day basis
and tends to keep the pre-meal insulin doses fairly constant from day to day.
Adjustments would usually be based on overall patterns.
This pattern assumes that the person likes to have and adheres to fairly constant
amounts of carbohydrate for their meals on a daily basis. Adjustments would still be
made from time to time for exercise, and if needed for sick days.
This method can suit some people very well, but others find it lacking in flexibility.

Which insulin dose to adjust based on blood glucose patterns?


Here we show which doses should be adjusted for children on the two common
examples of multiple daily injection:
MDI Example 1:
• Before breakfast: rapid or short-acting insulin
• Before lunch: rapid or short-acting insulin
• Before dinner: rapid or short-acting insulin
• Before bed: long acting insulin

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12: Insulin adjustment

Blood glucose showing a


high / low pattern Dose of insulin to increase / decrease

Before breakfast or overnight Evening long-acting insulin

Before morning tea or lunch Morning short-acting insulin

Before dinner Lunchtime short-acting insulin

Before supper or bed Evening short-acting insulin

MDI Example 2:
• Before breakfast: long-acting insulin and rapid or short-acting insulin
• Before lunch: rapid or short-acting insulin
• Before dinner: rapid or short-acting insulin
• Before bed: long acting insulin

Blood glucose showing a


high / low pattern Dose of insulin to increase / decrease

Before breakfast or overnight Evening long-acting insulin

Before morning tea or lunch Morning short-acting insulin or


sometimes morning long-acting
insulin

Before dinner Lunchtime short-acting insulin or


sometimes morning long-acting
insulin

Before supper or bed Evening short-acting insulin

By how much should I adjust doses?


This is the same as for 2 or 3 injections per day – see earlier in this section.
Dose adjustments of about 10% of the current dose are usually made, waiting several
days to assess the effects of the change.

2. Flexible multiple daily injections (flexible MDI)


In this method, the principles of adjustment based on overall patterns should still be
used as outlined above. However, pre-meal insulin doses are also adjusted from day
to day based on variations in carbohydrate intake and activity patterns. There is no
precise formula for how this is done. It is a type of “fuzzy logic” that is based on
person’s understanding of how food and activity affect their BGLs, judgement and
past experience. Many people may use much the same insulin doses and have the
same carbohydrate intake most days, with only occasional adjustments.
Other people find that they adjust doses more frequently.
The pre-meal injections allow greater flexibility for adjustment, since each of those
doses can be adjusted according to:
• the amount of carbohydrate that is going to be eaten;

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12: Insulin adjustment
• any planned activity; and,
• whether the current blood glucose needs correcting
(i.e., is higher or lower than desired).
Diabetes education now includes discussion of how to make these adjustments and
this may be done differently in different centres and by different people. It also
requires a good understanding of carbohydrate counting and different effects of
different carbohydrates (i.e., the glycaemic index).
In this method, a person has a good understanding of their usual carbohydrate intake
for each meal and the amount of insulin usually required to cover that. They then
make adjustments of pre-meal doses (up or down) according to the particular
circumstances at that time (planned food intake, recent or planned activity, current
BGL level) and their previous experience. Long-acting insulin doses are usually not
adjusted on a day to day basis, although may sometimes be reduced if needed relating
to sport and exercise (see chapter 11).

Example 1:
Justin is 14 years old and usually has 12 units of NovoRapid before breakfast.
Today he has a BGL of 5 mmol/l, but is not very hungry and plans to eat less.
Also he has Physical education class at 9am. He decides to reduce his dose to
8 units.

Example 2:
In the same circumstances above, if Justin’s BGL had been 14 mmol/l, he probably
would have taken the usual dose of 12 units, to assist the BGL to return to normal.

Example 3:
Emma is on a multiple daily injection plan with NovoRapid before meals and
Levemir before bed. She knows that on a usual day when she eats a usual breakfast
of cereal and toast, she needs 8 units of NovoRapid. However, she sometimes does
not feel like eating much for breakfast and only has a glass of milk. She finds that
5 units of NovoRapid works well on these days and her BGL late morning is
within target.

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12: Insulin adjustment

3. Insulin to carbohydrate ratio (ICR)


This is a variation of flexible MDI for day to day adjustment in which the pre-meal
insulin dose is calculated according to the amount of carbohydrate that will be eaten
using individual formulas that have been calculated with your diabetes team.
The ICR is a formula for how much insulin is needed to cover 1 exchange of
carbohydrate (15 grams of carbohydrate) and the dose is calculated according to how
many exchanges of carbohydrate are going to be eaten that meal. A correction can
also be made if needed for a high blood glucose and anticipated activity. Sometimes
different ICRs are needed for different meals or for different days of the week,
depending on activity levels etc.
This method is derived from the way insulin pumps work and can be applied
successfully for those on injections. There is variation as to how this is done in
different centres. Some diabetes centres use card or wheel calculators or PDA software
programs to assist families in using ICR systems, whereas others use manual
calculation methods. The exact details of these systems are beyond the scope of this
book and if you are using an ICR system, your local team will advise which system
they feel is best for you and teach you how to use it.

Example of using an ICR:


Francesca is on an insulin plan with Apidra before meals and Lantus at bedtime.
Based on her food and activity records, the diabetes team have calculated an insulin
to carb ratio of 3 units per carbohydrate exchange. She has also worked out a
correction factor with her diabetes team for when she is high – 1 unit of insulin
lowers the BGL by 2 mmol/l.
Today at breakfast her BGL is 12 mmol/l and she is going to eat 3 exchanges of
carbohydrate. She calculates 9 units of insulin to cover the meal and an extra
3 units of insulin to bring the BGL back to a target of 6 mmol/l. Therefore she takes
a dose of 12 units.

Which method ?
All of the above 3 methods of adjusting multiple daily injections can work well.
There is not currently evidence that any one method gives better outcomes than
another, although there are strong trends in diabetes management to use the more
flexible methods that may offer benefits for lifestyle.
Often the decision comes down to the system used in your diabetes centre and your
personal preference. It is important to stress that for success, all systems require
attention to carbohydrate counting, good amounts of blood glucose testing and
recording and thinking about adjustments.

Correction doses (“fix-up” adjustments)


Correction doses have been discussed in the context of adjustments in earlier
sections, but are summarized here. A correction or “fix-up” adjustment is adjusting
an insulin dose to correct a blood glucose reading that is currently higher or lower
than desired. Corrections can be incorporated into most insulin plans and are more
commonly part of MDI plans.
Correction involves an adjustment (increase or decrease) to rapid or short-acting
insulin or an extra dose of rapid or short-acting insulin. If you need to do lots of
corrections, then it usually means that the usual doses need some adjustment to
prevent the problem readings in the first place. Correction adjustments are not made
with long-acting insulin.

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12: Insulin adjustment
The amount of correction adjustment (up or down) will vary for individuals but will
usually be around 10 to 30 per cent of the rapid or short-acting insulin dose for that
time. Sometimes your diabetes team may give you a formula for calculating correction
doses for high BGLs which is similar to that used for insulin pumps
(see also the rule of 100 in chapter 18)
When an unexpectedly high or low BGL occurs it is wise to re-check the BGL after
washing the hands (if high, in case of sugar on the hands) and make sure a good size
drop of blood is used so that the meter is reading accurately.
Adjustment for sick days is a type of correction and is covered in detail in
chapter 10.

Example:
Your child is due to have their usual injection at breakfast time and the BGL is
18 mmol/l, with no ketones. If you know from previous experience that this makes
the BGL high for the rest of the day, it would be reasonable to give a little extra rapid
or short-acting insulin for the pre-breakfast injection.

Summary of insulin adjustment


Insulin adjustment is an essential part of diabetes care. Think of:
• Pattern adjustment: look for patterns that indicate a need to adjust usual insulin
doses because of high or low glucose levels at certain times over a few days or
longer periods. Look at this regularly.
• Day to day adjustment (Flexible daily adjustment): if you are using a flexible
MDI system, think whether you need to adjust a dose or doses now or today to
take into account a variation in carbohydrate intake or activity. Many people on
multiple daily injections make these flexible decisions on a daily basis with their
pre-meal injections.
• Corrections: think about the need for a correction adjustment, especially for
correcting a BGL that is too high now.

Insulin adjustment examples


Below are some additional examples of adjustments as discussed above.

Example 1 (pattern adjustment) Jordan, aged ten

Current insulin doses Morning Afternoon tea Bed


Actrapid 4 units 3 units
Protaphane 12 units
Lantus 6 units
BGLs Breakfast Morning tea Dinner Supper
Monday 7.5 12.0 10.5 8.3
Tuesday 6.5 15.6 6.7 9.5
Wednesday 8.1 13.2 4.6 7.3
Thursday 5.8 14.1 7.4 7.9
The blood glucose levels are generally within the desirable range except before
morning tea. A one unit increase in the morning dose of Actrapid should
improve the morning tea BGL.

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12: Insulin adjustment

Example 2 (pattern adjustment) Claire, aged three


Current insulin doses Morning Dinner Bed
NovoRapid 1 unit 1 unit
Levemir 5 units 3 units
BGLs Breakfast Morning tea Dinner Supper
Monday 3.6 9.0 10.5 8.3
Tuesday 5.1 11.5 6.7 9.5
Wednesday 3.0 8.6 4.6 7.3
Thursday 4.0 6.1 7.4 7.9
The blood glucose levels are generally within the desirable range except before
breakfast when they are too low. A one unit decrease in the evening dose of
Levemir should help the morning BGL be slightly higher and within target.
Checking the BGL overnight would also be a good idea until things improve.

Example 3 (flexible, day to day adjustment) Adam, aged 10


Adam has a swimming carnival and is in six events during the day. He finds it hard
to eat extra food when swimming a lot. His usual insulin doses are: before
breakfast: NovoRapid 6 and Protaphane 16; before dinner: NovoRapid 4 with
Levemir 8 units.
His mum lowers his morning dose to NovoRapid 4 with Protaphane 13 and lowers
his evening dose to NovoRapid 3 with Levemir 6 to reduce the risk of a delayed
hypo. She makes sure to check the BGL in the late evening also.

Example 4 (flexible, day to day adjustment) Louise, aged 16


Louise is having a normal day, but dinner is going to be high in carbohydrate and
she is quite hungry. She is on a multiple daily injection plan with Humalog before
meals and Levemir at bed. Usually she would have 8 units of insulin before dinner,
but tonight decides that 10 units would be a better estimate of her insulin needs.

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12: Insulin adjustment
Example 5 (correction adjustment) Lok, aged 11
Lok has three injections per day. Before breakfast: Actrapid 8, Protaphane 20;
before afternoon tea: Actrapid 8; and before bed: Lantus 8 units. He arrives home
from school with a blood glucose level of 22 mmol/l (negative ketones). Since it is
also raining and he is going to stay inside, his mother decides to give him ten units
of Actrapid at afternoon tea instead of the usual 8. His mum also tries to find out
if there is any reason for the high (e.g., less activity, extra or inappropriate food).

Example 6 (adjustment to an insulin to carbohydrate ratio)


Marc, aged 13
Marc is on a flexible multiple daily injection plan – he has Lantus insulin usually
25 units before bed and uses an insulin to carbohydrate ratio for his Apidra doses
before meals – 3 units of insulin per 15 g exchange of carbohydrate. He is happy
with BGLs, except they always seem high at morning tea. After thinking about
whether his carbohydrate estimation is accurate at breakfast, he decides to try using
an insulin to carbohydrate ratio of 3.5 units per exchange for his breakfast
Apidra dose.

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12: Insulin adjustment

Common questions and answers

Why may insulin needs increase so much in puberty?


? Puberty is a time of rapid growth and also hormonal changes. The body
needs more insulin as it grows bigger and it is also more resistant to
insulin at this time. After puberty and the growth spurt is complete,
insulin doses often decrease.

Do I always need to check with my doctor or diabetes educator


? before adjusting insulin?
No, only if you are not sure. Regular adjustment of insulin is a necessary
part of diabetes management and you will learn to do this. After a while
many families and teenagers become quite experienced in adjusting the
insulin themselves and it is good to be independent. If you don’t feel
confident, are unsure or it just isn’t making sense, contact your educator
or diabetes doctor for advice. Insulin can be much more difficult to
adjust in some children than in others.

Sometimes my child has a BGL of 18 or 20 mmol/l before bed,


? with no ketones. Should I give an extra dose of insulin to bring
this down?
Make sure the hands are washed before any test. If the blood glucose
is above 15 mmol/l, it is important to check for ketones, especially if
unwell (see chapter 10, Sick days). However, if your child has not missed
any insulin doses, is well and has no ketones, it is usually not wise to give
extra rapid or short-acting insulin at bed time because of the risk of a
hypo overnight. Often the BGL will fall by itself anyway. If you really
feel that a dose is needed for a very high reading, you must check the
BGL two hours later or in the late evening to make sure it has not
dropped too much. (Please note that this advice does not apply to those on
insulin pumps who would need to check the operation of the pump and set and
must correct the BGL without delay – see chapter 18).

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13: Type 2 Diabetes
Chapter 13 Type 2 Diabetes

Key Points
u Type 2 diabetes can occur in young people
u Important risk factors for type 2 diabetes are being overweight
with an unhealthy diet and not enough exercise or generic factors
u T
 ype 2 diabetes can often be treated with an improved healthy food
plan, exercise and tablets, but insulin may also be needed

Most of this resource focuses on type 1 diabetes since most children and adolescents
with diabetes have type 1 diabetes. Overall, however, type 2 diabetes is by far the most
common form of diabetes in the community (80 to 90 per cent of diabetes) and
predominantly affects older people. There is great concern about the global increase
in the incidence of type 2 diabetes which is predominantly related to lifestyle factors.
A number of factors increase the risk of developing type 2 diabetes, including being
overweight or obese, family history, low physical activity and ethnic background.
Obesity is the main risk factor and is related to an inactive lifestyle, being unfit and
having an unhealthy diet. Unfortunately, the age of onset of type 2 diabetes is falling
and we are starting to see an increase in type 2 diabetes in teenagers.

Chapter
What is type 2 diabetes?
In type 1 diabetes, the main problem is insulin deficiency, with the pancreas being 13
unable to make insulin. In type 2 diabetes, the main problem is resistance to insulin.
The pancreas is able to make insulin, often in large amounts, but the insulin is not
able to work well because the cells of the body are resistant to its effects. Sometimes
later in type 2 diabetes, the pancreas becomes exhausted and insulin resistance and
insulin deficiency are both present.
Type 1 diabetes is often called insulin-dependent diabetes because insulin therapy is
always needed. Type 2 diabetes is often called non-insulin-dependent diabetes
because it can often be treated initially with a combination of weight loss, diet and
exercise. Tablets and insulin treatment may also be needed.

Why do people get type 2 diabetes?


One of the major risk factors is being overweight (obesity), which is related to lifestyle
factors such as not enough exercise, eating too much and an unhealthy diet (too
much sugar and fats). The people at most risk are those who have central obesity,
meaning that they carry a lot of the extra weight in the tummy or abdominal region
(often called ‘apple shaped’).
There is a genetic contribution to type 2 diabetes, which tends to run in some
families. There are also some less common forms of type 2 diabetes which affect non-
obese people and usually they have strong family genetic risk factors.

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13: Type 2 Diabetes

It is also clear that there are certain racial and ethnic groups that have a particularly
high risk of type 2 diabetes, especially if they become overweight. The highest risk
groups around the world are the Pima and Canadian Indians, Polynesians, Australian
Aborigines and Torres Strait Islanders. There is also a moderately increased risk in
Asians, African-Americans and Mexican-Americans.
As well as seeing an increase in type 2 diabetes in teenagers, doctors are also seeing
an increasing number of young people with obesity and insulin resistance which is
likely to go on to the development of type 2 diabetes unless it can be controlled.
This is sometimes also called the metabolic syndrome or insulin resistance syndrome
or pre-type 2 diabetes. In addition to being overweight, it is also common to have a
particular type of skin appearance called acanthosis nigricans. This is a dark brown,
velvety marking that is most common around the back of the neck but can also occur
in the underarms, groin and elbows. This skin appearance is a very strong marker of
insulin resistance and risk of type 2 diabetes.

Diagnosis of type 2 diabetes


Type 2 diabetes can present with the same symptoms as type 1 diabetes, including
excessive thirst and urination and tiredness and even diabetic ketoacidosis. More
commonly however, unlike type 1 diabetes which develops rapidly, the symptoms of
type 2 diabetes usually develop gradually. Many people with type 2 diabetes have no
symptoms at all and are only diagnosed after screening on a routine medical check
which finds a high blood glucose level or glucose in the urine. Because of this, people
with type 2 diabetes may have had the disease for many years unknowingly and can
have significant complications already present at the time of diagnosis.

Treatment of type 2 diabetes


Type 2 diabetes requires careful management for life and requires healthy lifestyle
choices in addition to treatments prescribed by the diabetes team. Some people with
type 2 diabetes can do well with dietary measures, exercise and weight loss and may
not require other treatment, at least not for a number of years.
However, most will eventually require additional treatments which can include oral
medications (tablets) or sometimes insulin or a combination of both. All of these
aspects are discussed on page 134.

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13: Type 2 Diabetes
Change to a healthier lifestyle
This involves becoming more active, with regular exercise and changing to a healthy,
balanced diet. If the person smokes, this should be ceased as it increases the risk of
vascular complications.

Weight control
Being overweight can make it difficult to manage your diabetes. Adults who are
overweight need to lose weight and this alone will help control the diabetes.
In children and teenagers who are still growing, some may need to lose weight, but
in some a goal may be to maintain the same weight or gain very slowly over time.
Then as they grow taller, their weight will become more appropriate for their height
and the balance will be restored.

Food plan and healthy eating


Healthy eating is important for managing type 2 diabetes, weight control, blood
pressure control and managing blood cholesterol levels. The principles of the food
plan for type 2 diabetes are similar to that for type 1 diabetes (see chapter 6 “Food
and healthy eating”) although there are some special considerations. The healthy
food pyramid gives a good guide for this. People should follow a normal, healthy,
balanced food plan.
Meals should be based on:
• A variety of vegetables, fruit and legumes (e.g., baked beans, lentils)
• High fibre breads, cereals and grain foods (e.g., pasta, rice)
With smaller amounts of:
• Low fat dairy foods
• Eggs, nuts, lean meats, poultry and fish
• Fats and oils
Extra foods such as high fat snacks, takeaways, chocolates, lollies and soft drinks
including diet drinks should be kept to occasional treats.

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13: Type 2 Diabetes

The amount and composition of the food plan should be adjusted to allow the weight
goals to be achieved. It is important to have guidance from a dietitian and have
regular reviews of the food plan. Carbohydrate is an important part of the food plan,
however there is some evidence that in type 2 diabetes a diet lower in carbohydrate
and slightly higher in protein and monounsaturated fat may result in a better control
and metabolic profiles. The dietitian will discuss these aspects with you.
It is generally agreed that it is important to eat regular meals and snacks containing
carbohydrate throughout the day and try to have a similar intake of carbohydrate
from day to day. This is particularly important for those on insulin or tablets that
stimulate insulin release, so that the glucose lowering effect of these is balanced
with carbohydrate intake. Those on no medications or insulin-sensitising drugs
(e.g., metformin) will have less need of between-meal snacks and do not need to be
as consistent in their carbohydrate intake.

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13: Type 2 Diabetes
Different carbohydrate foods affect blood glucose levels differently – the glycaemic
index describes this. Try to include some low GI food in each meal and snack, as low
GI foods tend to keep the blood glucose levels more steady. Limit the amount of food
containing sugar, but some sugar in food is a normal part of a balanced diet.
Fat should be kept low in the diet, especially saturated fats. Most of the fat intake
should be monounsaturated or polyunsaturated fats. An adequate amount of fibre
intake is important and soluble fibre, such as that contained in fruit, vegetables and
legumes is particularly beneficial as it helps slow the after-meal rise in blood glucose
levels.
Here are 8 tips for a healthier lifestyle that can be applied for all people, including
those with type 2 diabetes or pre-diabetes:
1. Eat regular meals, which include some carbohydrate
2. Have breakfast each day – do not skip breakfast
3. Pack a healthy lunch
4. Choose healthy snacks
5. Eat slowly and stop eating when satisfied
6. Take care with takeaways – healthy choices are possible
7. Choose water as a drink
8. Be active everyday

Exercise
Exercise is a most important part of the management plan for type 2 diabetes.
Exercise has many benefits including weight control, increasing glucose uptake by
cells, helping insulin work better and general fitness and health. Your diabetes team
will discuss a suitable exercise plan with you. This should focus on regular, achievable
exercise goals.
It is important to do moderate exercise regularly (preferably every day or at least four
times per week) rather than doing strenuous exercise occasionally. Moderate exercise
is an amount which makes you puff a bit but you should still be able to carry on a
conversation during the exercise. Aim for 45 to 60 minutes of moderate exercise at
least four times per week. Walking is an excellent form of exercise and is best done
with a friend or other family members for companionship and safety.
In teenagers it is also important to put reasonable limits on sedentary activities such
as television, computers and computer games since research has shown a strong
relationship with these and obesity.
Those with type 2 diabetes treated with insulin or medications that stimulate insulin
secretion (e.g., sulphonulureas) need to remember that hypoglycaemia is more likely
with exercise. It may be necessary to reduce insulin doses (and in some cases tablet
doses) on days of strenuous exercise and/or take extra carbohydrate before and
during exercise as suggested in Chapter 11. Test the BGL more frequently as a guide.
Your diabetes team will advise depending on the exact details of your treatment.
Those with type 2 diabetes on no medications or on insulin sensitiser drugs
(e.g., metformin) do not have a risk of hypoglycemia with exercise, so no special
precautions are needed.

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13: Type 2 Diabetes

Monitoring and follow-up


People with type 2 diabetes require blood glucose monitoring, regular haemoglobin
A1c checks and regular follow-up by their doctor and diabetes team. This is similar
to type 1 diabetes, although the frequency of monitoring and follow-up may vary,
depending on the treatment required. Target BGLs are tighter than for type 1
diabetes (usually 3.5 to 6 mmol/l before meals and up to 8 mmol/l after meals) and
the target for the HbA1c is less than 7%.

Screening for complications – blood pressure and lipids

The diabetes team will arrange for appropriate checks for various complications such
as eye, kidney, nerve and feet problems. It is also very important to have regular blood
pressure and blood lipid (cholesterol) checks and have treatment of these if needed.

Medications for type 2 diabetes


It is important to remember that type 1 diabetes cannot be treated with tablets and
always requires insulin therapy. For type 2 diabetes there are a range of tablets that
may be effective, either as single medications or in combination. However, type 2
diabetes may also require insulin. Detailed explanation is beyond the scope of this
resource, but a brief summary is given here. Your doctor will advise which is most
appropriate for the individual and give full information about potential benefits, side
effects and other issues. The medication recommended may change with time.
There are several types of medications used for type 2 diabetes treatment. Not all are
currently approved for use in young people. Combinations of some agents are used.
1. Medications that make the body more sensitive to insulin: Two classes of these
medications are currently available:
• metformin
• thiazolidinediones (e.g., pioglitazone, rosiglitazone).
These aim to overcome the major problem of insulin resistance in type 2 diabetes.
This class of medication (usually metformin) is often the first choice for overweight
teenagers with type 2 diabetes and can be very effective in combination with the
healthy lifestyle measures described above. Hypoglycaemia is most unlikely with
these medications because of the way they act.

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13: Type 2 Diabetes
2. Medications to help the pancreas secrete insulin: Two classes of these
medications are currently available:
• sulphonylureas (e.g., gliclazide, glibenclamide, glipizide, glimepiride,
tolbtamide)
• meglitinides (e.g., repaglinide).
These help the pancreas to secrete more insulin in order to overcome the insulin
resistance and relative deficiency of insulin. Some are taken once or twice a day,
others before each meal. Hypoglycemia is a possibility with these medications
because they are promoting insulin release.

3. Medications that alter the absorption of food:


Acarbose is a medication that slows the absorption of carbohydrate foods.
This can help prevent rises in blood glucose levels and is most often used in
combination with other medications.
Orlistat is a medication that blocks absorption of about 30 per cent of the fat that
is eaten. This does not specifically treat the diabetes but may help diabetes
management in people having major problems achieving weight control.

4. GLP-1 analogues (e.g., Exanitide)


These are a newer class of medications that work to control blood glucose through
a variety of mechanisms and are given by injection, usually twice daily. At the time
of writing this edition, they have not been used very much in children or
adolescents.

5. Other newer agents, e.g., DPP-4 inhibitors (such as sitagliptin)


These are another newer class of medications that are taken by mouth and may
be increasingly used in type 2 diabetes, but have not yet been used much in
younger people.

6. Insulin
As outlined above, insulin treatment may be needed in young people with type 2
diabetes, either from the time of diagnosis or at any time. It is important not to
delay the use of insulin if other treatments are not able to control the diabetes
well. Insulin may be used in combination with some of the other medications.

Sick days and type 2 diabetes


Extra care is needed if you are unwell. Similar principles apply to sick days for type 1
diabetes, especially if you are being treated with insulin (see chapter 10). Here is a
summary of sick day management for type 2 diabetes:
• Check the blood glucose more frequently
• Keep taking usual insulin doses and other diabetes medications
• If you take insulin, you may need extra doses during illness if BGLs are high – see
chapter 10
• If you take metformin tablets, these may need to be ceased if vomiting – contact
your doctor or diabetes team
• Keep drinking fluid to avoid dehydration – glucose containing fluids if the BGL
is under 8 mmol/l and glucose-free if over 8 mmol/l
• Keep eating if possible

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13: Type 2 Diabetes

• Contact your doctor, diabetes team or hospital if:


• You cannot keep the BGL below 15 mmol/l or above 4 mmol/l
• There is persistent vomiting
• The person is getting sicker
• You are worried and don’t know what to do

Type 1 and type 2 diabetes (combination)


Occasionally people can have combination forms of diabetes with features like both
type 1 and type 2 diabetes. These people may be treated with a combination of insulin
and a medication to improve insulin sensitivity, such as metformin.

Screening for insulin resistance and type 2 diabetes


Since progression to type 2 diabetes may be prevented, it is recommended that young
people with risk factors be screened. Screening with a fasting blood glucose level is
recommended every two years from the age of ten if there is obesity combined with
two or more of the following:
• a close family history of type 2 diabetes
• high risk racial or ethnic group
• signs of insulin resistance (e.g., acanthosis nigricans skin changes).
Major efforts are being put into programs to prevent obesity in young people and to
detect the early warning signs that will lead to a high risk of type 2 diabetes. Young
people who are overweight and have the acanthosis nigricans skin appearance as
described earlier should always be assessed for insulin resistance and type 2 diabetes.

136 Caring for diabetes in children and adolescents


13: Type 2 Diabetes
Common questions and answers

My 13-year-old son is overweight and has been diagnosed with


? insulin resistance. Is it inevitable that he will go on to get type 2
diabetes?
No. He has the opportunity to prevent or delay this by changing to a
healthy diet, exercising more and controlling his weight. This can often
be difficult to achieve so you should seek the advice of your family
doctor, dietitian and other health professionals as needed.

My 14-year-old daughter has had type 1 diabetes for three years.


? She is on large doses of insulin and our diabetes specialist
has suggested adding a tablet (metformin) to her treatment.
Does this mean her type of diabetes has changed?
Your daughter probably has one of the ‘combination’ forms of diabetes.
In these, insulin treatment is essential, but insulin resistance can be a
major problem which can often be helped by adding a medication like
metformin that helps make the body more sensitive to insulin.
This would only be done on the advice of a diabetes specialist.

My four-year-old son has type 1 diabetes and is on three insulin


? injections per day. When he is an adult will he be able to be
treated with tablets instead of insulin, like his grandmother?
No. Your son will always require insulin replacement because he has type
1 diabetes in which the pancreas cannot make insulin.

My 15-year-old daughter has type 2 diabetes like her father, and


? is treated with metformin tablets. Do I need to watch for any
side effects?
Metformin is generally a safe medication, provided that certain
precautions are taken. You will be advised about these by your diabetes
team. Metformin should not be used in people with any major liver or
kidney problems. If your daughter has a significant illness (e.g., one
requiring admission to hospital), the metformin should be stopped and
you should contact your doctor without delay. There is a risk of a serious
complication called lactic acidosis if metformin is continued during
major illness. Metformin also should not be taken with some other
prescription medications and X-rays with iodine contrast should be
avoided. Your doctor will advise on all of these issues.

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13: Type 2 Diabetes

My 12-year-old daughter is 10 kg over the healthy weight range

? for her age and I have been told she has mild type 2 diabetes.
I am putting her on a strict diet with the aim of losing the
10 kg over the next three months. Is this the best approach?
Weight control is an important aspect of type 2 diabetes management
and involves exercise and diet management. However, it is unrealistic
and unhealthy for your daughter to lose this much weight at this time in
her life. A much better approach would be for your daughter to aim at
staying the same weight or lose weight only gradually. Then, as she has
her growth spurt, her weight will gradually move into the healthy range
for her height.

My father has type 2 diabetes and is treated with tablets and


? insulin. His BGL is usually between 4 and 10 mmol/l.
Why can’t we achieve BGLs like this in my son, who has
type 1 diabetes?
Your father’s insulin dose is supporting his pancreas in making enough
insulin, a bit like a child with type 1 diabetes in the honeymoon phase.
Unfortunately, BGLs can’t always be controlled this well once the
pancreas isn’t making any insulin at all, as in type 1 diabetes. However
newer insulin plans and insulin pumps are helping to make tighter BGL
control more possible in type 1 diabetes.

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14: School and Diabetes
Chapter 14 School and Diabetes

Key Points
u Planning ahead helps minimise any problems with diabetes at school
u Remember the hypo pack for school
u T
 he teacher and school need to have information about diabetes
and your child
u T
 alk to the school and make sure they have the information they
need

It is normal for parents to feel anxious about sending their child to school after a
diagnosis of diabetes. You want to feel that your child is in safe hands while at school.
Your child may also be worried about returning to school and especially about the
management of the diabetes and being different. With planning and support, the
child can participate safely in all school activities and can have a productive and fun
time at school. The approach required will vary considerably depending on the age
of the child.
Below are some points to think about for your child at school.

Chapter
Information and education
14
Teachers and office staff need to receive information about diabetes, but not too
much as that can cause information overload. This should include information on
food, exercise, hypos and sick days and this is provided in The Schools Pack
which is distributed to all schools and available through Diabetes Australia and their
website (www.diabeteskidsandteens.com.au) or through your diabetes centre.
Other information is available on this website for schools, including a Webcast about
diabetes and students.
The Schools Pack is comprehensive and includes:
• An information flipchart
• Diabetes Emergency Information Poster
• Duty of Care Information
• Note for Parents
• Management Plan
• Medical Alert sheet
• Schools Careline Card
• Emergency Card
• Fact Sheets for Support Persons (What is type 1 diabetes?,
What is hypoglycaemia?, Physical Activity and type 1 Diabetes)

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14: School and Diabetes

It is important for you to go to the school and make sure they have this information
and run through it with your child’s main teacher and other appropriate staff
(e.g., sports teacher, music teacher). It is also important to advise the child’s teachers
that relief teachers need to know about the diabetes. Speak to your child’s teachers
regularly about your child’s general progress and any possible concerns related to the
diabetes.
It is best to assume that the teachers will not have any knowledge about diabetes,
so start with a basic summary. Common misconceptions about diabetes are that
children fully understand diabetes and should be totally self-caring or that activity
should be restricted. It is important for the teachers to understand that these are
not true.

In general, school staff do not take on the responsibility of giving insulin or glucagon
injections. They are often happy to assist with or supervise blood
glucose testing once it has been explained and shown to them and may assist
with supervising an insulin pump. They have an important role in ensuring that the
child with diabetes is eating their food and in watching for hypos and assisting with
hypo treatment.

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14: School and Diabetes
In some circumstances the diabetes educator may do a school visit to provide
education for the staff. Also diabetes health professionals often run teaching seminars
for school teachers and for parents preparing their children for school.

Hypoglycaemia (hypos)
Teachers and office staff need to know how to recognise and treat hypos.
Hypo food should be readily available and hypos treated where they occur, rather
than needing to send the child somewhere. A child with a hypo should never be sent
alone to obtain their hypo food or left alone during a hypo. If initial hypo treatment
is not effective it can be repeated each 15 minutes until the child recovers. Your child
or the teacher should let you know if a hypo has occurred at school.
Make sure there are hypo packs at school (e.g., with the class teacher and in the
staffroom).

Contents of a hypo pack


1. Name of the child.
2. List of contents.
3. Written descriptions of hypo symptoms in your child.
4. Instructions for how to treat a hypo.
5. Fast-acting carbohydrate such as juice boxes or jelly beans.
6. Slow-acting carbohydrate such as muesli bars fruit bars and biscuits.
7. Parents’ and hospital contact numbers.
In general, school staff do not take on the responsibility of giving glucagon injections
(or insulin injections). In the event of a severe hypo an ambulance will be called and
this will carry glucagon.

A child with diabetes should never be sent to the sick bay unsupervised
and never be left alone if they are having a hypo.

Insulin doses and glucose testing at school


It is common for children to have insulin injections at school or to be using an
insulin pump. How this is managed will depend on the type of therapy and the age
of the child:
• Older children and teenagers can usually take responsibility for their own blood
glucose testing and insulin injections or pump bolusing.
• Some children will require provision of a place where they can keep their testing
meter and insulin pen and go for an injection.
• Younger children will need supervision with blood glucose testing and insulin
injection or bolusing with a pump. School staff usually do not directly do these
tasks, but are usually happy to assist or supervise with these provided that they
have been appropriately briefed.
• Sometimes school staff will agree to do blood glucose testing or give injections or
boluses; this requires negotiation and appropriate education and training.
• The level of assistance needed will vary and this can be negotiated with the
teacher and school, with the assistance of your diabetes educator or Diabetes
Australia if needed.

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14: School and Diabetes

Poster for staff room


Add your child’s photograph to the poster which is provided in The Schools Pack.
This is for the school staff room and contains information on hypo symptoms and
treatment . You may wish to modify this if it does not match your child’s symptoms
of a hypo.

Identification
The child should always wear a medical identity necklace or bracelet, stating they have
diabetes. Children may also need identification for the school bus indicating that
they may need to eat on the bus.

Examples of diabetes alert wrist-bands

Food
In younger children the teacher may need to ensure that all of the meals are eaten on
time and that food is not given to, or obtained from, other children. Meals and snack
times should be at the same times as other children. Occasionally an additional snack
may be necessary just before going into school in the morning. With planning, your
child can order lunch from the school canteen. Parents need to be informed if there
is going to be a change in meal times at school for a special event.

Exercise
Any moderate or strenuous exercise is likely to need extra carbohydrate unless you
have planned with your child to reduce insulin doses (see chapter 11, Exercise and
Sports). Your child will still be able to join in special events such as parties, swimming
carnivals, sports days and excursions but you need to know about these events in
advance so that you can plan ahead.

Letting others know


Encourage your child to let the teacher know if they are feeling unwell or having a
hypo. In general, it is best that classmates know about the diabetes, but some children
prefer to have only a few friends know. This will vary between individuals and with
the age of the child. Friends with some knowledge about diabetes can be excellent
‘buddies’ and help out with hypos and so on.

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14: School and Diabetes
If your child requires injections or blood tests at school they may wish to do this in
privacy and the school should help make arrangements for this. In general, school
staff are unable to take on the responsibility for performing blood tests or giving
insulin doses at school but are usually happy to supervise these if they are appropriately
briefed. Careful negotiation with the school will usually result in them being very
helpful. Bear in mind, that it usually works best to give the school a small amount of
essential information rather than over-loading them with instructions and less
relevant details.

Participation
The child with diabetes should be allowed to participate fully in all activities
(e.g., sports, excursions, sports days, carnivals and camps). Some of these will require
special liaison and preparation by parents. The diabetes educator will help with
special advice, depending on the circumstances. Staff involved in these activities
should know about the child’s special needs.

Behaviour and discipline


The child with diabetes should be treated the same as other children, as much as
possible. The child should be disciplined in the normal way; however, they should
never be detained at mealtime or after school. You need to be informed if your child
is going to be late home.
If they need extra snacks, to test blood glucose, to take insulin or have extra trips to
the toilet, they need to be allowed the time. However, avoid drawing unnecessary
attention to their condition.

Blood glucose levels and effects on learning and


examinations
Teachers should be aware that when a child has low blood glucose levels, or after low
blood glucose levels, concentration, behaviour and school performance may be
affected. Tiredness, irritability and lack of concentration can occur with either high
or low blood glucose levels. Fortunately these problems are usually minor and
occasional.

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14: School and Diabetes

Special provisions are available for children sitting external examinations. Forms
supplied by the school should be filled in well in advance. Provisions are made for
blood glucose testing during exams and extra time for testing, hypo treatment and
recovery if necessary. If diabetes causes major problems during an examination,
students can apply for consideration under the Misadventure and Illness provisions.

High blood glucose levels


If blood glucose levels are high, extra trips to the toilet to pass urine are often needed
and the child should also be allowed to drink as much water as they like. The school
should inform you if high blood glucose levels, excess urination or thirst persists.

Sick days or emergencies


If your child becomes sick at school, you should be contacted. If you are not
contactable, then the child’s diabetes team should be contacted for advice.
For any emergency situations (e.g., unconsciousness, convulsions), the teachers
should know how to lie the child in the coma position and call the ambulance and
tell them that it is a child with a diabetic emergency. These measures are detailed in
chapter 8 and in the Schools Pack.

Associated video resources for this chapter


Loco parentis – Managing diabetes at primary school
ERC Media, Educational Resource Centre, Royal Children’s Hospital,
Melbourne, 2004.
In this video, parents, students, teachers and health professionals share their
insights and tips for successful diabetes management at primary school and pose
new questions about where the teaching profession is heading in terms of taking
on additional responsibility for the medical needs of students.
View via the link at www.kidsdiabetes.org.au

Loco parentis – Managing diabetes at secondary school


ERC Media, Educational Resource Centre, Royal Children’s Hospital,
Melbourne, 2004.
This video discsuses similar issues, but in the secondary or
high school environment.
View via the link at www.kidsdiabetes.org.au

144 Caring for diabetes in children and adolescents


14: School and Diabetes
Common questions and answers

My son is reluctant to tell other children that he has diabetes.


? How should we approach this?
Children vary in this. Some children don’t mind everyone knowing, but
some prefer only a few close friends to know. It is good if your child can
have a few close buddies who know he has diabetes and a little bit about
hypos, so that they can tell an adult if there is a problem.

My child will be starting school soon. How do I go about making


? sure the teacher knows what to do about the diabetes?
Planning ahead is important. Visit the school and discuss with the
teacher or head teacher. The school needs to have written information
about diabetes (provided in the Schools Pack which they should have or
you can provide them with), and you also need to tell them the particular
details about your child’s routine. Arrange for hypo packs to be at the
school, arrange a poster for the staff room and make sure the school
knows how to contact you. Usually this is enough, but if there are
particular concerns, contact your educator who may be able to arrange a
visit to the school for education.

My eight-year-old daughter has her breakfast at 7.30am and


? recess is not until 11 am. She is having quite a few hypos just
before recess. How can we deal with this?
More than three hours may be too long without a snack for young
children on some insulin patterns. Options are to reduce the morning
short-acting insulin or to have an extra carbohydrate snack just before
going in to class at 9 to 9.30 am. It is best not to have to have extra snacks
during class as this may make your child feel different.

My nine-year-old son is starting to come home with half of his


? lunch left in his bag, and has had low blood glucose levels some
afternoons. What should I do?
Talk to your son about why this is happening. Sometimes a simple
change of food choices may work – variety is important as is food that is
easy to eat. Perhaps let him order lunch from the canteen some days for
a change. Sometimes they are too eager to start playing and ‘don’t have
time’ to eat their lunch. You may need to visit the teacher and check that
lunch is supervised, and reinforce how important it is that he eats all his
lunch.

I worry about what will happen if my child has a severe hypo at


? school. The teachers say they are not able to give glucagon.
Is this a problem?
Teachers are generally unable to take on the responsibility of giving
injections. The school will know to call an ambulance in the event of a
severe hypo and ambulance officers will give glucagon or a glucose
injection.

Caring for diabetes in children and adolescents 145


15: Different age groups and diabetes

Chapter 15 D
 ifferent age groups and
diabetes

Key Points
u Diabetes affects children differently throughout the age groups
u Different issues arise at different ages

Toddlers and preschoolers


Preschool children are imaginative thinkers and are in what is called the trust stage
and fantasy stage. During this stage parents look after all aspects of the diabetes, but
a gradual increase in participation in diabetes routines is encouraged. It may be
helpful to play games around the diabetes procedures, gradually letting the child help
(e.g., fingerpricks, choosing the injection or infusion site, pressing the plunger during
injection). Letting them practise on their dolls or teddy bears is very helpful.
Young children often have difficulty recognising hypos,
but there is a gradual increasing recognition of hypo
symptoms which should be encouraged by discussion
about feelings at the times of hypos. Hypos are more risky
during this age because the toddler is unlikely to
recognise or be able to treat them and therefore the child
requires constant supervision by a responsible person.
Children may have some understanding of foods they
can eat, but apart from giving simple choices control
needs to be taken by the parents or carers. Young children
have little concept of time and their routines need to be
controlled. Even toddlers and young children should
have a pattern of fairly regular meals and snacks and the
pattern of 3 main meals and 2 or 3 snacks per day works
well. The family should all sit together at mealtimes with minimal distraction
(e.g., turn off television) and try to make meal times a positive social interaction.
This often encourages better participation and eating from children.
During this time the aim is to keep blood glucose levels in the target ranges discussed
earlier, however numerous factors can lead to unstable blood sugar levels (e.g.,
teething, immunisations, variable appetite, activity and sleeping patterns and minor
childhood illnesses). Blood glucose levels are usually much more variable at this age
and targets may need to be individualized.
Increasing numbers of children are going onto insulin pump therapy, including in
this young age group (see chapter 18). Parents often find that an insulin pump helps
reduce some of the variability at this age and allows them to cope better with the
variable eating and other factors at this age. Pumps can be locked so that young
children cannot activate the settings. Infusion sets are more usually placed on the
buttocks, although interference with the set seems very infrequent since children gain
an early understanding of the importance of their diabetes therapy.

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15: Different age groups and diabetes
School-age children (6 to 11 years)
Children of this age are concrete thinkers, curious and sociable. They have also
become more objective and are increasingly responsible. Participation in diabetes
care increases; however, supervision is still generally required with all aspects of
diabetes management. Children of this age are acquiring the necessary fine and
gross motor skills but lack the maturity and knowledge to take on the full
responsibility. They need to be carefully supervised in their diabetes care and adults
need to make sure that insulin doses are accurate and are all given, whether by
injection or insulin pump.
During this age range children usually start doing their own fingerpricks, often
from quite a young age. Many will wish to start trying some of their own injections
from around nine to ten years or sometimes earlier, although they should not be
forced if they are reluctant. Using pens is fairly straightforward, but the ability to
accurately draw up the insulin with a syringe may take longer to develop; this is
usually possible by around 10 to 11 years. Children gradually become more aware
of time and can learn to take greater responsibility for eating food at a set time.
Knowledge about food increases rapidly. This age group is usually able to recognise
hypos and seek treatment.
For children of this age on a pump, they will actively participate in set changes and
some may do this by themselves, with supervision. Often from 9-10 years of age,
children will also estimate their meal boluses and operate the pump themselves,
although supervision is still needed.
Additional factors that can affect blood glucose control include peer influence,
mood, growth, variation in food intake, sports, parties, childhood illnesses and
variable routines at school.
Chapter

15

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15: Different age groups and diabetes

Adolescents
Adolescence is a time of major physical and psychological change and increasing
independence. However, behaviour and degree of responsibility vary enormously
during this period. Body image is very important and peer pressure can lead to denial,
self-neglect and risk-taking behaviour.
Adolescents should be increasingly taking over responsibility for their diabetes care
but continue to need help and supervision. Often during early adolescence, further
education is required, directed primarily at the adolescent, rather than at the parents.
Additional education about things such as alcohol, puberty, sexuality, drugs, smoking
and complications is necessary. Adolescents should increasingly recognise the
importance of good blood glucose control to prevent complications and should be
more willing to have multiple injections. Pumps are also very suited to adolescents
and they are often capable of quite independent operation of the pump, although
teamwork with the family and general supervision are still always advised.
If the diabetes was diagnosed at a young age, often the initial education was mainly
directed to the parents. It is important to have some formal education directed to the
adolescent at this time so they are equipped with the information to move gradually
towards increasing self-care and independence.

Adherence and general management issues


Some adolescents begin to resent routines. Also, poor or variable cooperation with
food, insulin injections or pump boluses and testing can become a problem.
Unfortunately it is common to see adolescents doing little or no glucose testing and
becoming variable in their routines. Faking or fudging of blood glucose levels is not
uncommon as the adolescent tries to ‘satisfy’ their parents and health professionals
by having some reasonable readings in their book. Usually this is temporary and is
discovered when the blood glucose meter is downloaded or the HbA1c is out of
keeping with the recorded blood glucose readings. It can be a difficult time for
families as questions over trust and honesty arise.
Insulin omission (forgetting or deliberate) is also reasonably common at this age.
With insulin pumps, it is often the food boluses that are missed, particularly at
school. Insulin omission is obviously quite serious as it leads to poor control and risk
of serious illness with diabetic ketoacidosis.
Remember that poor adherence to diabetes management is not always directly linked
to diabetes issues. Sometimes children and adolescents may be angry or sad with
other areas in their life, such as, poor body image, lacking school performance,
conflict with significant relationships and low self esteem. Additionally some
children and adolescents may manipulate insulin doses and other routines in an
attempt to control weight. This is not the right way to achieve weight loss and can
cause more problems with the diabetes.
Parents and adolescents need to continue working as a team with the diabetes
through the teenage years. This is strongly encouraged, although a more subtle,
hands-off approach is needed than in childhood. Studies have shown that handing
over total control too early and lack of involvement with diabetes by parents in the
teenage years is associated with poorer control and other difficulties, including
‘burnout’ in adolescents. Clearly the degree of involvement will be differently
negotiated for different families. Compromise is needed on many issues at this age,
including diabetes. Keeping lines of communication open between parents and
teenagers is important. The diabetes team will work to support and guide teenagers
and their families and may tend to be listened to more than “nagging parents”.

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15: Different age groups and diabetes
Even though negotiation and reasoning is important, if dangerous practices such
as insulin omission, poor insulin dose decisions or insufficient BGL testing are
occurring at any age, parents or caregivers need to take control and directly supervise
and monitor all aspects of diabetes care. Sometimes it is even necessary
to take over some of the diabetes procedures, just as at the time of diagnosis.
Your diabetes team will provide support as best possible, but they cannot take
over the parental role.
These certainly can be difficult years for diabetes management and control may not
be optimal. However, there is light at the end of the tunnel and with greater maturity
in later adolescence there will hopefully be improved motivation, interest and
cooperation with the diabetes management. Remember also that many young people
with diabetes sail through the teenage years with no major problems.

Transition to independent adult care and adult diabetes services


This process is usually started in the clinic when your teenager starts seeing the
doctor or other health professionals without a parent. By late adolescence, it is
necessary for the person to have gained independence and confidence in looking
after their diabetes. In late adolescence (usually between 16 and 18 years), it will be
necessary and appropriate to move from a children and adolescent diabetes service to
an adult service. It is important that this step be well planned and successfully made.
Your diabetes team will advise and assist at the appropriate time and discuss the
various options in your locality.

Appropriate career options


Some professions (such as the defence forces, commercial pilot, police, fire brigade)
are not usually open to people with diabetes and they need to know this when
considering career options. Organisations such as Diabetes Australia and JDRF can
assist with further current information.

Growth and puberty


The growth spurt and changes of puberty result in much higher insulin requirements
and it is important to try to keep up with this by appropriate monitoring and insulin
adjustment. The insulin treatment plan may change over time, with a different
pattern of insulin injections or use of an insulin pump. Adolescent girls may have
higher and more variable blood glucose levels around the time of the menstrual
period, but appropriate monitoring will guide the necessary insulin adjustments.

Weight issues
It is often during adolescence that concerns
arise about excessive weight gain, especially in
girls but also in boys. Teenagers are very
conscious of body image and this is
contributed to by peer influences and the
media. Sometimes teenagers will manipulate
their insulin doses in an attempt to avoid
weight gain or lose weight. This is a poor
strategy which usually fails and leads to poor
diabetes control and long-term weight gain.
Your diabetes team are aware that this is a
very important issue at this age and want to
work with young people to avoid this.

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15: Different age groups and diabetes

The diabetes team try to take a preventative approach and it is important that there
is not an overt focus on diet or weight as this can worsen the problem. Growth will
be monitored and if concerns occur with weight there are a number of effective
strategies. These include additional advice about the food plan, changes to types and
patterns of insulin and increasing exercise.
From time to time teenagers, more commonly girls, start to restrict the amount of
food they eat because of concerns about body image and weight. Any such concerns
should be discussed with the diabetes team who will reinforce concepts of healthy,
sensible eating and normal body image. Additional help will be sought if needed, but
hopefully the situation can be contained before it becomes more serious.

Smoking
Smoking needs to be actively discouraged from an early age. Smoking is a health risk
to all people, but particularly to those with diabetes because of the increased risk of
diabetes complications, particularly vascular disease. Children and adolescents are
more likely to take up smoking if adults in their home smoke.

Drugs
Illicit drugs or unprescribed drugs are damaging to the health of all adolescents,
but represent an added danger in those with diabetes through their effects on
conscious level, insight and judgment, appetite and body metabolism.
Mind-altering drugs make it difficult for people to recognise hypoglycemia and to
have correct judgment about treating hypos, food and insulin doses. Some drugs
increase appetite, causing high blood glucose levels.

Alcohol
Alcohol can be dangerous and unhealthy for adolescents. For people with diabetes
there are additional problems with alcohol. Delayed hypoglycaemia is a risk because
alcohol blocks glucose production by the liver. Impairment of the senses by a
combination of alcohol and hypoglycaemia is very dangerous. Alcohol can also
contribute to excess weight gain and increased blood lipid levels.
Discussion about alcohol will be included at an appropriate time in diabetes
education. Alcohol intake cannot be condoned below the legal age limit; however, it
is recognised that teenagers will often experiment with alcohol at an earlier age.
Young adults who choose to have alcohol should be advised how to do this responsibly
and minimise risks:
• Drink in moderation only; one to two drinks maximum at any session and avoid
drinking daily.

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15: Different age groups and diabetes
• Select beer or dry wines in preference to other things. Low alcohol beer is a
preferable option. Avoid sweet wines, fortified wines, spirits and liqueurs.
• Always eat some carbohydrate before drinking and continue to have a regular
carbohydrate intake during the period of drinking and afterwards.
• Blood glucose levels should be checked regularly, especially before going to bed
and overnight if concerned. Ensure a level above 6 mmol/l before bed and if
below this or borderline, eat extra carbohydrate. A reduction in overnight
insulin is often appropriate to avoid overnight hypos after drinking alcohol.
• Arrange for a responsible person to wake the person the next morning at an
appropriate time, to see that all is well.

Contraception
This is an important general issue in adolescence and will be discussed by the
healthcare team at an appropriate time. If contraception is required, condoms are
recommended for both contraception and protection against sexually transmitted
diseases. Intra-uterine devices are not recommended for young women with diabetes.
The oral contraceptive pill can be used by young women with diabetes without
significant extra risk, unless there are certain complications such as high blood
pressure, lipid abnormalities, vascular disease or blood clotting disorders.
Unplanned pregnancies in women with diabetes pose major extra risks to their own
health and the health of their baby.
These comments are of a general nature only and if contraception is required,
the issues should be discussed in detail with your GP, diabetes doctor or educator.

Driving
Unpredictable or severe hypoglycaemia is the main hazard to driving however the
authorities also need to know that there is adequate general diabetes care and that
there are not serious complications that would make driving hazardous. On applying
for a learner’s permit, forms will be issued to take to the doctor for a medical report
and medical examination. The wish to obtain a licence will sometimes be an incentive
for adolescents to improve aspects of their diabetes care. Doctor’s have a legal
obligation to recommend against the granting of a licence if the requirements are not
being met. A report from the diabetes doctor is usually needed every two years for a
standard licence renewal.
With a responsible attitude, driving is generally safe. The blood glucose level should
be checked immediately before driving and food for treating hypoglycaemia must be
available in the vehicle.

Diabetes alert identification


All people with diabetes should wear a bracelet or necklace indicating that they have
diabetes. A variety of alternatives is available so an acceptable style can usually be
found. At the very least, a card should be carried in the wallet or purse indicating that
the person has diabetes. Teenagers often need to be reminded about this.

Ear piercing, body piercing and tattooing


These are choices for individuals and their families to make. Skin infections and
infection of piercing sites are much more common if BGLs are high and diabetes is
in poor control. Aim to have good BGLs before considering this and have it done by
professionals only. See your doctor or diabetes team if you have questions before
or after.

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15: Different age groups and diabetes

Associated video resources for this chapter


Here we go ‘round the Mulberry bush – Positive parenting
of toddlers with diabetes
ERC Media, Educational Resource Centre, Royal Children’s Hospital,
Melbourne, 2002.
This video focuses less on the physiological aspects of the condition and more on
the issues of coping day to day with a toddler with diabetes. It is recommended
viewing for parents, families and friends of young children who have been recently
diagnosed.
View via the link at www.kidsdiabetes.org.au
Loco parentis – Managing diabetes at primary school
ERC Media, Educational Resource Centre, Royal Children’s Hospital,
Melbourne, 2004.
In this video, parents, students, teachers and health professionals share their
insights and tips for successful diabetes management at primary school and pose
new questions about where the teaching profession is heading in terms of taking
on additional responsibility for the medical needs of students.
View via the link at www.kidsdiabetes.org.au
Loco parentis – Managing diabetes at secondary school
ERC Media, Educational Resource Centre, Royal Children’s Hospital,
Melbourne, 2004.
This video discsuses similar issues, but in the secondary or high school
environment.
View via the link at www.kidsdiabetes.org.au
GYST – a life guide for young people on the move
ERC Media, Educational Resource Centre, Royal Children’s Hospital,
Melbourne, 2006.
GYST’ is a fresh, new holistic approach to the complex process of transition. It’s
a comprehensive ‘life guide’ covering all the most important aspects of getting set
up in adult life with specific information for young people living with diabetes. It
is packed full of valuable information that every young person needs to know.
www.gyst.org.au

152 Caring for diabetes in children and adolescents


15: Different age groups and diabetes
Common questions and answers

My two-year-old’s blood glucose levels seem to vary a lot.


? I think this is because some days he eats really well and other
days just doesn’t seem interested in food. What can we do?
This is common at this age and blood glucose levels do vary more.
Offer simple choices if not eating well, or carbohydrate-containing
fluids. Avoid the temptation to offer treats instead of healthy choices –
give simple choices of acceptable foods e.g., Would you like yoghurt or
banana? Sometimes if your child goes through a phase of less appetite,
lowering the insulin dose may be necessary – discuss with your diabetes
team. Insulin pumps may be helpful in smoothing control in such
situations.

My eight-year-old is not showing any interest in giving her own


? injections. How should I encourage this?
Proceed gently. Children vary in the age that they feel ready to start
doing injections or inserting pump sets. Usually they will do their own
fingerpricks earlier, but many don’t start giving injections or pump
related procedures until nine or ten or sometimes later. It is important
they are involved in diabetes routines from early on, even if it is just
helping with some part of a procedure. Gradually, involvement in
practical procedures can be increased and they start to take more direct
responsibility, with continued supervision. Accurate drawing up of
insulin or use of an insulin pen may take a little longer in some cases and
needs to be closely supervised.

I was shocked when our educator said that our 14 year-old


? son was writing down fake blood glucose readings in his
record book. He has always been so reliable.
Where have we gone wrong?
You haven’t gone wrong. Having diabetes can be particularly difficult in
adolescence. Attention to the diabetes may wane and it is more difficult
to supervise. Adolescents are striving for independence but are not quite
ready for it, especially as far as the diabetes is concerned. Sometimes false
readings are written down to try to please parents or stop them from
worrying. Try to establish some agreement with your son about how you
may cooperate to help with the diabetes. Sometimes the diabetes team
can help negotiate this, since teenagers will often listen more to them
than ‘nagging parents’. Hang in there – things will improve!

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15: Different age groups and diabetes

At what age should my teenager start seeing the diabetes team

? by himself?
There are no definite rules for this and it is a question of when
individuals feel comfortable about it. It is usually harder for the parent!
Usually in the early to mid teenage years the diabetes team will start to
recommend seeing the young person by themselves first as this is
important in the transition to independent adult living. The parent or
parents are usually seen with the teenager afterwards and relevant issues
discussed.

I don’t want to encourage my daughter to drink alcohol but

? if she does, I want her to do it safely. How can I approach this?


These types of dilemmas are faced by all parents of teenagers.
The diabetes team will usually raise the issue of alcohol at an appropriate
time, since many teenagers will experiment with it. While not
encouraging alcohol, it will usually be explained that adults can have
alcohol in moderation in a safe manner by following certain rules.
Then, if or when the teenager does try alcohol they have some
information about how to do it with minimal risk. It is important to
discuss the issue of alcohol in education.

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16: Follow-up visits and long-term management
Chapter 16 F
 ollow-up visits and
long-term management

Key Points
u Y
 our child needs review by your diabetes team approximately every
three months, or sometimes more often
u A
 diet and education review should occur each year, or more often
if needed
u A
 haemoglobin A1c test should be performed approximately every
three months to assess overall control
u M
 aintaining good long-term control will minimise the problems and
complications that diabetes may cause
u T
 ransition to adult services needs to be planned at the appropriate
time

The first phase of your diabetes education aims to give you the basics about caring for
diabetes at home. Sometimes this will occur during a stay in hospital of several days
or may be done as part of a day care program where you spend the nights at home Chapter
and return to the hospital each day for the first few days.
Moving on from this first phase can feel like a big step and will naturally cause some 16
anxiety. However you will get plenty of support and guidance from the diabetes team,
especially in the early stages. Your diabetes team is always willing to help, but it is
important that you actively seek help from the team when you are concerned or have
questions. Otherwise the team may assume that “all is well”.

Moving on from the first phase


Your diabetes team will assist you in all of these important steps that will prepare you
for looking after diabetes at home.
1. The first phase of education will be completed: The aim over the first few days
is to give you your child and family the basic education about diabetes
management. There is a lot to learn and it is impossible to do this all at once.
The diabetes team will put a plan in place for further education sessions.
2. Diabetes supplies obtained: You will need a range of supplies for diabetes
management. Your diabetes team will advise about any different options and
where to obtain them. The main requirements are:
• blood glucose meter
• blood glucose strips
• finger pricker and lancets
• ketone test strips for urine or blood (some meters)
• diabetes record book
• insulin and insulin prescriptions

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16: Follow-up visits and long-term management

• syringes and/or insulin pens (those with pens need syringes also in case of
pen malfunction and for possible use of mini-dose glucagon)
• glucagon (GlucaGen hypokit)
• medical alert bracelet or necklace
• sharps container
• Insulin and glucagon require a prescription – your diabetes doctor or family
doctor will supply these when needed.
• Supplies for insulin pump therapy, for those using insulin pumps
3. Arrange to join the National Diabetic Services Scheme (NDSS) which allows
people with diabetes to obtain supplies at concessional prices through NDSS
approved pharmacies Diabetes Australia or their Diabetes Centre.
The diabetes team will provide you with a form for this. Supplies such as syringes,
needles, testing strips and lancets are obtained at concessional prices.
4. Obtain information about joining local diabetes organisations such as Diabetes
Australia and Juvenile Diabetes Research Foundation.
5. I nsulin doses: You will be advised of the doses of insulin to have at home by the
diabetes team and when to phone to get further advice about doses. Insulin doses
are likely to change rapidly in the first few weeks and frequent advice from the
educator or doctor is usually required to adjust doses.
6. Contact numbers: Phone, fax and e-mail are all useful ways to communicate with
the diabetes team. The diabetes team will supply these.
7. Follow-up arrangements:
Telephone follow-up: Usually there will be fairly close follow-up by telephone.
This gradually decreases as time goes on, insulin changes become less frequent
and you feel more confident about the home management of diabetes.
Remember that if you are concerned, diabetes advice is available at all times from
your hospital or diabetes centre.

F
 inishing education: During the first few weeks, appointments will be made for
you to return to the diabetes centre for more education checks on progress and
adjustment of diabetes management. You will have frequent contact with the
diabetes team in these early weeks. It is particularly important for the food plan
and insulin doses to be reviewed and adjusted if needed during these
early days.

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16: Follow-up visits and long-term management
Long-term follow-up
Regular visits
Regular follow-up visits are important for diabetes. You will get to know your diabetes
team well and children will often look forward to visits to the team that they know
so well. After the more frequent visits near diagnosis, routine follow-up for most
children is three to four times per year. At clinic visits, the diabetes doctor will discuss
any questions or concerns you have, look at blood glucose and other records, examine
your child and discuss any adjustments or other management that may be needed.
You will also see other members of the diabetes team as needed at these visits
(diabetes educator, dietitian or social worker/psychologist), but not necessarily at
every visit.
A HbA1c should be performed at each clinic visit (three to four times per year).

Annual review
Usually once per year there will be a more major review paying particular attention
to growth, development and puberty, blood pressure, nutrition and checking for any
other problems or complications. Once each year it is also recommended that there
be a full review session with the diabetes educator and dietitian. Visits may need to
be more often for children under five or where there are special concerns about
the diabetes.
Most diabetes centres also recommend an additional blood test once every year or
two to check that there are no problems developing, such as thyroid problems, coeliac
disease or high cholesterol. Alternatively these tests may be included as part of
diabetes complications screening. Your diabetes team will explain this to you.

Complications screening
After five years of diabetes in younger children or two years in older children and
teenagers, it is usually recommended to start screening for diabetes complications.
Again, your diabetes team will advise about how this is done and more details are
given in chapter 19 ‘Complications’.

Recommended minimum follow-up for diabetes:


• Visits to your child’s diabetes doctor and team three to four times each year.
More frequent visits will be required just after diagnosis and later if there are
concerns about progress.
• Diet and education review yearly with interim advice as needed.
• Haemoglobin A1c test performed three to four times each year.

Diabetes outreach and shared care


Children living in or near the major cities usually see a children’s diabetes specialist
for regular review 3 or 4 times per year, as well as other members of the diabetes team
as needed. Country children will usually see their local paediatrician or physician for
routine review. Also, diabetes specialists from one of the major children’s hospitals
may visit regional areas and can see you and your child for a consultation if needed.

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16: Follow-up visits and long-term management

For regional families, the aim is for your child to have expert local care as well
as periodic review by specialists from the children’s hospitals if needed.
These arrangements work through the close cooperation of the diabetes teams from
country areas and children’s hospitals.

Other diabetes supports: workshops, seminars and


diabetes camps
In addition to the support and education you have from your diabetes team, there are
other avenues for learning about diabetes, updating knowledge and sharing
experiences.
Hospitals or diabetes organisations will often run workshops, seminars or other
education programs. Sometimes these will cover a wide range of topics but sometimes
are more specific (e.g., toddlers diabetes support group, seminar for teachers,
education session for grandparents and other carers). Details of these are available
through your diabetes centre and organisations such as Diabetes Australia and
Juvenile Diabetes Research Foundation.
Diabetes camps are also a great way of learning more and helping your child to adapt
to diabetes in a fun environment. For younger children, parent and child camps are
available in some states and older children and teenagers attend camps by themselves.
More information on camps is in chapter 17.

Goals for long-term management and control


The overall goals of diabetes management are to have:
• normal growth and development
• good social and psychological adjustment
• full participation in school and other activities
• healthy eating patterns
• blood glucose levels in the target range as much as possible
• minimal hypoglycaemia or no serious hypoglycaemia
• long-term metabolic control as good as possible as measured by
haemoglobin A1c
• reduced risk of long-term complications.

What does the haemoglobin A1c (HbA1c) tell you?


The HbA1c gives a measure of overall blood glucose control over the last two to three
months. While blood glucose tests give important information about daily variations
in blood glucose levels, the HbA1c gives important information about long-term
control.
The HbA1c level should be measured approximately every three months when you
visit your doctor or diabetes centre.
As red blood cells move around in the bloodstream, the haemoglobin they contain
picks up glucose. The amount of glucose picked up depends on how much glucose
there is in the bloodstream. If the average blood glucose levels are high over a two to

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16: Follow-up visits and long-term management
three month period, lots of glucose will stick to the haemoglobin and the HbA1c will
be high. If blood glucose levels are mostly within the target range the HbA1c will be
in the desirable range. If blood glucose levels are swinging from high to low, the
HbA1c may be reasonable, but this is not a good balance. The HbA1c is a little more
influenced by recent readings than earlier readings in the two to three month period.
Daily blood glucose levels and regular HbA1c measurements (approximately every
three months) are important in monitoring diabetes control. Diabetes control is
judged by both the HbA1c and the blood glucose levels.

Recommended control targets


The closer the HbA1c is to the non-diabetic range the better, provided that there is
not too much hypoglycaemia. Below are realistic recommendations for target blood
glucose levels and HbA1c.

Recommended ranges for blood glucose levels and HbA1c


in type 1 diabetes

Blood glucose range* HbA1c*


• Target ranges for blood glucose levels are generally Less than 7.5%
o Before meals 4 to 7 mmol/l (all ages)
o After meals 5 to 10 mmol/l
o at bed time 6 to 10 mmol/l
o at 3am 5 to 8 mmol/l

*Individualized targets may need to be set for some individuals

People without diabetes have an HbA1c of 4 to 6 per cent but people with diabetes
usually experience too much hypoglycaemia if their HbA1c is maintained in this
range. Therefore, the HbA1c with diabetes runs higher than the non-diabetic range.
The HbA1c can come into the non-diabetic range in the ‘honeymoon phase’
following diagnosis, but later is likely to run a little higher.
People often feel frustrated when they can’t get all of the blood glucose levels in the
target range. This is rarely possible. The aim is to get the majority of readings within
or close to the target range, but realistically often only 60 to 80 per cent of readings
will be in the target range.
While the above glucose and HbA1c targets are desirable, they will not be possible
for some children at certain times. The aim, however, is always to be moving towards
the targets – any degree of improvement of control is beneficial.

Caring for diabetes in children and adolescents 159


16: Follow-up visits and long-term management

Relationship between blood glucose levels and


HbA1c
The HbA1c is not an average of blood glucose levels. However, there is a good
relationship between average blood glucose levels and HbA1c which is approximately
as follows:

HbA1c Estimated average BGL (mmol/l) over last 8-12 weeks


6% 7.0
6.5% 7.8
7% 8.6
7.5% 9.4
8% 10.1
8.5% 10.9
9% 11.8
9.5% 12.6
10% 13.4

It is evident from this table that to have a HbA1c in the recommended target range
of under 7.5%, average BGLs need to be under 9.5 mmol/l.

Problems with control


The following are signs that there are problems with diabetes control and that a
review of management is needed. Refer to chapter 7 ‘Monitoring diabetes control’ for
an approach to unstable blood glucose levels. If the solution is not clear, your diabetes
educator or doctor should be contacted for further advice.

Signs indicating problems with diabetes control


1. Blood glucose levels are often falling outside the recommended range.
2. More than 3 or 4 mild hypos per week especially if the reason is unclear.
3. Hypoglycaemia unawareness; that is the child is not aware of hypos – they are
only noted on testing or by others.
4. Any episode of severe hypoglycaemia (e.g., fits or unconsciousness).
5. HbA1c above the recommended range or rising over the last two
measurements.

The nature of diabetes is such that there will be periods when blood glucose levels
will be stable and other more difficult periods when they fluctuate (see the section on
blood glucose levels in chapter 7). Sometimes, despite everything you do, there will
be ups and downs that cannot be explained. This can be frustrating, but usually
improves with time.

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16: Follow-up visits and long-term management
Insulin omission and other control problems
Diabetes is a challenging condition for young people, their families and health care
advisors. It has a unique set of attributes:
• It is a long-term condition with no cure yet possible.
• It requires time-consuming and complicated management from day to day.
• It makes young people feel different from their peers.
• It reduces lifestyle flexibility.
• Problems can develop rapidly if there are management problems
(e.g., severe hypoglycaemia or diabetic ketoacidosis).
• There is a risk of long-term complications which cannot be predicted for
individuals but is greater if control is not optimal.
It is not surprising that some young people at times find this condition overwhelm-
ingly difficult and become unable or unwilling to adhere to management
recommendations, even though they are aware that this is not in the best interest of
their health. It is important that young people, their families and health care advisers
are aware of the difficulties that can sometimes arise, so they can help get through
these times. These problems are more commonly encountered in teenagers who are
starting to be more independent, but elements of them are also seen in younger
children. The psychological aspects of diabetes in children and adolescents require
much more research and understanding.
Problems that may be encountered are:
• insulin omission (forgetting or missing doses)
• problems with blood glucose monitoring
• problems with food
• diabetes ‘burnout’

Insulin omission (forgetting or missing doses)


Omission or missing of some doses of insulin is common in teenagers or younger
children who are taking responsibility for some or all of their own doses. It is a major
contributor to poor diabetes control and a common factor in teenagers admitted with
diabetic ketoacidosis. Sometimes this is due to being forgetful or over-busy or
distracted. It can be a problem with either insulin injections or insulin pump therapy.
The injections or boluses most commonly omitted are those at school. Sometimes
the omission is deliberate. Reasons for this may be misguided attempts to control
weight, not wanting to appear different at school or psychological disturbance and
attention-seeking.

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16: Follow-up visits and long-term management

Insulin omission is suspected if the HbA1c is in the poor control range (especially if
this is so on more than one occasion), if blood glucose levels are persistently high
despite apparently reasonable insulin doses or if there is recurrent diabetic
ketoacidosis.
If insulin omission is a problem, the diabetes team will explore the possible
contributing factors in order to change the pattern. Re-education or counselling may
help. Sometimes multiple injection routines are changed back to simpler routines if
it is felt that acceptance will be improved. Sometimes pump users take a break from
the pump and return to an injection plan for a time. Frequently, the diabetes team
will ask parents to work much more closely with the young person with diabetes and
supervise and assist with all aspects of diabetes management until the situation can
be turned around.

Problems with blood glucose monitoring


After many years of blood glucose monitoring, teenagers will sometimes lose
motivation and do less or no monitoring. Clearly, this makes diabetes management
difficult and contributes to poor control. There may be a tendency to write down
false readings in the record book so as to satisfy parents and the diabetes team, but
this will be uncovered when the meter is downloaded or the haemoglobin A1c is
found to be high. Unfortunately, non-invasive blood glucose monitors are not yet a
reality and good diabetes management requires frequent BGL readings. Continuous
glucose monitoring is likely to be used increasingly, but still requires significant
user input.
Helpful strategies can include compromise on the number and timing of BGLs,
re-education and counselling, ensuring that a modern, rapid blood glucose meter is
available and teamwork with parents or other family members.

Problems with food


Problems with the diabetes healthy food plan are common and a major contributor
to difficulties with diabetes control. Common problems are overeating, excessive
treats and snacks and irregular timing of meals and snacks. Food binges may occur
and there is an increased tendency to eating disorders in diabetes, such as anorexia
nervosa or bulimia. Weight is often a concern in teenage girls and there is sometimes
manipulation of food and insulin in an effort to modify this.
These problems require a team approach with special input from the diabetes
dietitian. It is important to normalise the food plan as much as possible and help
teenagers to sensibly and realistically address any concerns they have about food
issues and weight.

Diabetes ‘burn-out’
It is not surprising that the relentless demands of diabetes over long periods can lead
to a situation of burn-out in young people with diabetes and their families. Features
include a lack of motivation, a lowering of aims and targets, missing or avoiding
follow-up appointments and a feeling of helplessness in being able to change the
situation. There is an element of burn-out in most of the problems mentioned earlier
in this section. All of these things can lead to anxiety, stress or even depression and
it is important to address these. Depression can be more common in people with
diabetes and is important to act on signs of this, so that the situation can be helped.
There is no easy solution to burn-out, but helpful strategies can include simplifying
diabetes routines where possible, sharing the load with family members, re-education,
counselling and sometimes psychological intervention. The diabetes team will try to
maintain closer contact in order to help motivation. It is also important for young

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16: Follow-up visits and long-term management
people to have positive diabetes role models and an understanding of advances in
diabetes management that will give them hope for easier management and possible
cures, provided these are realistic. Attending diabetes camps can help re-motivate
some young people.
For all of these issues, the diabetes team take a non-judgmental approach and bring
in other health professionals to help if needed. Diabetes requires a lot of compromise
in people’s lives, especially in the teenage years. Often the difficulties are only
temporary and are overcome with time.

Transition to adult care


All young people will need to transition to care in adult diabetes services at some
time. This should be a planned process in which there is appropriate preparation and
time for adaptation.
Your diabetes team will guide you about local transition recommendations and
arrangements. Here are some important points in the transition process:
• Transition will often occur between 16 to 18 years of age. However this may
depend on whether a young person has left school, availability of local services
and their own preferences.
• Transition should not be a sudden event, but a planned process over a period of
time which allows education and knowledge to be reviewed and for the young
person to adapt to the upcoming change
• Adolescents transitioning need to be a given a range of possible options for the
adult service they could attend and participate in that decision; for example –
preferred location, hospital clinic or private service. Some services run joint
young adult clinics (with adolescent and adult diabetes specialists) as a way of
facilitating transition.
• The diabetes service will arrange for a transfer of relevant medical information to
the new adult diabetes team, with the young person’s consent
• It is important that young people do not get “lost” in the transition process,
through either not attending the suggested adult service or dropping out early
because it is different to what they are used to or because they feel disconnected
from their long-term diabetes team. Parents and caregivers have a role in helping
to ensure that young people have their appointments and attend them, especially
early in the process. Your diabetes team will also have mechanisms in place to
monitor the transition process and to try to ensure that successful transition has
occurred.
• If there are problems in the process of transition, you should contact your child
/ adolescent diabetes team to discuss. Sometimes a different centre or doctor may
need to be tried, since different services suit different people.

Associated video resource for this chapter


GYST – a life guide for young people on the move
ERC Media, Educational Resource Centre, Royal Children’s Hospital,
Melbourne, 2006.
'GYST’ is a fresh, new holistic approach to the complex process of transition.
It’s a comprehensive ‘life guide’ covering all the most important aspects of getting
set up in adult life with specific information for young people living with diabetes.
It is packed full of valuable information that every young person needs to know.
www.gyst.org.au

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16: Follow-up visits and long-term management

Common questions and answers

How can I get advice about diabetes problems if I am worried?


? The first step is to contact your usual diabetes educator, dietitian or
doctor, depending on the question. If you can’t contact them and the
question is urgent, the major children’s diabetes centres have a 24-hour
telephone service for urgent advice.

We live in a country town a long way from a major children’s

? diabetes centre. How should our child be followed up?


It is a widely accepted recommendation that children with diabetes
should see a doctor with specialist experience in children’s diabetes
about every three months. In country centres the appropriate doctor is
usually a specialist paediatrician, or may be an adult physician for older
teenagers. Teams from children’s hospitals diabetes centres visit some
regional areas and your doctor may recommend you see them for review.
Country centres usually also have a diabetes educator and dietitian with
experience in children. Find a follow-up pattern that suits you and your
child.

Can the haemoglobin A1c be too low?


? Yes. A low haemoglobin A1c can be achieved by having lots of hypos, but
this is definitely not a good thing. Severe hypos with fits or unconsciousness
or hypoglycaemia unawareness become an increased risk if the HbA1c is
too low.

What should I do if I am not happy with the advice I am given


? by my doctor or someone else in the diabetes team?
This can sometimes be awkward, but as a parent you need to address
this. If you feel you can, discuss the matter with your doctor or educator
or other member of the team and often this will help sort things out.
If there are still worries, it is always your right to seek another opinion
from whomever you choose. Remember that diabetes is a long-term
condition and you and your child need to find a doctor and other
advisers who suit you. Your health professionals need to be experienced
in caring for children with diabetes.

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16: Follow-up visits and long-term management
My child’s diabetes is quite difficult to manage and we can never

? seem to get the haemoglobin A1c in the recommended target


range. What should we do?
The recommended range is the ideal but, for a variety of reasons, not
everyone can reach this. The most common reason is that blood glucose
levels are higher than ideal at those times of the day when you are not
testing. It may also be that the insulin types or timing are not the most
suitable for your child at this time. Your diabetes team will be able to
help with these issues. Remember that any improvement in haemoglobin
A1c is of benefit in reducing the risk of complications (e.g., improving
from 9.6 per cent to 9.1 per cent, even though it is not in the target
range).

My 15-year-old son made the switch to four injections per


? day about a year ago, and was doing well. Now his control has
deteriorated; he seems to be doing less testing and it seems
he is often forgetting his lunch-time injection at school.
What can we do?
It sounds like there are some elements of diabetes burn-out. Explore the
reasons for difficulty with the lunch-time injection. Sometimes this is
something simple that can be overcome (e.g., lack of privacy or not
enough time). The diabetes team will assess if they can re-motivate your
son or if there are other particular issues. A review by the social worker
or psychologist may help. They will also consider whether it may be
appropriate to go back to three or two injections a day for a while.
Work with your son in a team effort so he is not carrying all of the load
of day-to-day management. It is important for parents to stay involved in
assisting with diabetes care, even during the teenage years.

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17: Travelling, holidays, camping and other special situations

Chapter 17 T
 ravelling, holidays, camping
and other special situations

Key Points
u T
 ravelling and holidays should not be restricted because your child
has diabetes
u P
 lanning ahead will help prevent any problems and ensure that
travel and holidays are safe and enjoyable
u S ee your diabetes doctor and educator before the trip – especially
for overseas trips
u Changes to timing and routines can be dealt with by planning ahead
u Diabetes camps help many kids with diabetes and are fun!

Preparing for travel


Things to consider
Before travelling it is important to think about:
• length of journey
• possibility of delays
• timing of insulin
• availability of carbohydrate food
• access to medical services and diabetes supplies
• care of insulin and diabetes equipment
• customs regulations in different countries
• changes in types of foods
• changes in activity levels
• changes in medication and sleep routines
• the prevention and management of sickness away from home
• carrying letters from your diabetes team in case they are needed at customs or
security checks

Review by the diabetes team


A review by the doctor and educator is advisable about one month before the trip.
This is especially important for overseas trips. Diabetes control will be assessed and
adjustments made if needed. Appropriate letters will be supplied and advice given
about coping with time zone changes. Other issues such as insulin adjustments for
activity changes, overseas medical facilities and so on can also be discussed.

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17: Travelling, holidays, camping and other special situations
Letters and contacts
• Obtain a letter from your doctor summarising medical information about your
child in case you need to seek medical advice away from home. For overseas trips
and domestic flights, obtain a letter stating that you will be carrying supplies such
as insulin and syringes; this is so you avoid any problems at customs or security
inspections.
• Ask your doctor about suitable diabetes services at your destination. Usually some
contact names addresses and phone numbers can be provided for most parts of
the world.
• Make sure you have the contact phone, fax number and e-mail address of your
usual diabetes doctor and educator in case you or others need to contact them
about your child.

Immunisations
Ensure your child is up to date with
immunisations and has any special
immunisations required for travel to
particular countries. Allow at least two
months for this in case special
immunisations are required – your GP
will be able to advise about this.

Travel insurance
Obtain travel insurance well in advance. As the insurer will usually require
information from your doctor, sufficient time needs to be allowed for this process. Chapter
Diabetes Australia can provide information about companies providing suitable
medical and other travel insurance. It is a good idea to shop around. 17
Contact with the airline
Advise the airline that your child has diabetes and find out approximate meal times
and whether extra snacks are available. It is best not to ask for a ‘diabetic diet’ as this
is often low in carbohydrate and not the type of food kids like. Ask for a kids’ meal
or normal meal and if there is not enough carbohydrate ask for more or use some of
your own food.

Supplies
• Make sure you have enough supplies – insulin, glucagon, syringes, insulin pens,
blood glucose meter and spare batteries, blood and urine test strips, diabetes
bracelet or neck chain, insulin pump supplies etc. It is a good idea to have a spare
blood glucose meter or a bottle of blood glucose strips that can be read
by colour change without a meter (visual test strips) as a back-up. The insulin
glucagon and blood glucose meter need to be protected from extremes of
temperature; if these are likely to occur on the trip use an insulated container or
packing. If you are travelling with an insulin pump, make sure that you have a
supply of insulin pens as a back-up in the event of pump failure.
• Make sure your child is wearing a diabetes ID necklace or bracelet.
• During the trip, essential diabetes equipment needs to be divided between two
separate hand luggage bags in case one is lost. Supplies should not be packed in
your luggage in the cargo hold as they may be exposed to extreme temperatures or
get lost at the airport.

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17: Travelling, holidays, camping and other special situations

Preparation in case of sick days


• Prepare a kit for sick day management.
• Revise information on sick day management and hypoglycaemia management.
• Obtain supplies of easy-to-eat carbohydrate for treating hypoglycaemia as well as
enough extra carbohydrate in case of delayed meals. For a long flight always have
sufficient carbohydrate foods for two to three meals. Be prepared for long and
unexpected delays. Carry supplies of bottled drinks and water if allowed, although
there are limits on carrying liquids on some flights.
• For trips to countries where English speaking is uncommon, it may be advisable
to have medical letters translated into the local language and also some translations
for important requests (e.g., I need to find a doctor I need sugar quickly). Making
contact with the Australian consulate may also be advisable for longer stays or in
the case of any difficulties.

Food and hygiene issues


Like all travellers in overseas countries, you need to be extremely cautious with food
hygiene. In countries where water supplies and general hygiene are suspect, drink
only bottled water, avoid ice cubes and salads and avoid street food sellers and market
stalls.

Reference information
Take this book “Caring for Diabetes in Children and Adolescents” with you or you
can access it on-line at www.kidsdiabetes.org.au.

Changes to timing and routines


Adjustments can be made when needed to cope with changes in diabetes routines.
In general, diabetes control will be smoothest in children when routines are fairly
regular; however, there will often be times when routines have to change. In all of
these situations, extra blood glucose monitoring and thinking about patterns of
insulin action and meal times will usually help you work out what to do.
Insulin pumps allow the greatest flexibility for changes in routines, although
adjustments are still relatively easy on multiple daily injection plans (MDI).

Overseas flights and time zone changes


Insulin adjustments for flights crossing time zones need to be individualised, taking
into account:
• the duration of the flight
• number of hours of time zone change
• timing of meals, snacks and stop-overs
• usual pattern of insulin doses
• time of arrival at destination and plans for that day (e.g., sleeping or active).

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17: Travelling, holidays, camping and other special situations


Your educator can help you work out a detailed plan and when possible you should
allow one month’s notice of travel if you want help in working out a plan. General
principles are:
• Never omit insulin on flights.
• Do extra BGL testing.
• Keep one watch on local departure time and one on destination time.
• Set an alarm or arrange to be woken to avoid over- sleeping on the plane or after
arrival.
• Be prepared to give extra doses of rapid or short-acting insulin whenever BGL
is above the target range.
• Be prepared for unexpected hypos
• Carry plenty of additional carbohydrate in case there are delays late meals and so
on.
• Higher BGLs are more likely during flights because of inactivity.
• Low BGLs are more likely if care is not taken to avoid more than the usual overlap
of long-acting insulin doses or if less food is eaten because of sleeping more than
usual.
• No significant adjustments are required for predominantly north-south travel
with less than a two-hour time shift (e.g., Sydney to Tokyo).
• When travelling west, the travel day is extended (e.g., if you leave eastern Australia
in the late afternoon you arrive in London at breakfast time after travelling about
24 hours).
• When travelling east, the travel day is shortened (e.g., if you leave eastern Australia
in the morning you arrive in Los Angeles earlier the same morning after travelling
for 14 hours).
Adjustments are easiest for people on multiple injections (usually rapid or short-
acting insulin before main meals and long-acting insulin before bed or twice-daily).
Continue to take short-acting insulin before main meals (about every four to five
hours). For long-acting insulin, the options are:
• If you usually take long-acting insulin twice daily, continue to take it approximately
every 12 hours. If your morning and evening doses vary significantly, you can
readjust the ratios at your destination. Use extra BGL monitoring to guide dose
decisions.
• If you usually take one injection per day of long-acting insulin, options are:
• Give the next long-acting dose approximately 24 hours after the previous
one, but at a reduced dose, so that you can resume your usual time of day
injection at the destination. The time intervals will vary according to your
destination, but the first dose at the destination will also need to be reduced
if the dose given in transit was significantly less than 24 hours ago. The
principle is that you will need about the same amount of long-acting insulin
each 24 hours, whether you split it or not.
Or,
• Give the next dose of long-acting insulin at your usual time of day
(morning or evening) at the destination, which could be up to 36 hours after
the last long-acting injection. This will work satisfactorily, provided that rapid
or short-acting doses continue to be taken regularly before meals with top-
ups as needed if high. If it is less than 24 hours after the last
long-acting injection, give a reduced dose to avoid overlap.

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17: Travelling, holidays, camping and other special situations

Adjustments for those on two or three injections per day:


• This will vary considerably, depending on the pattern of your insulin plan and the
type and number of long-acting insulin doses
• Start by thinking about your long-acting doses; whether you have this once or
twice per day
• If you have long-acting insulin twice per day, plan to have doses about 12 hours
apart; the ratios may need changing at your destination because of time shift
• If you have long-acting insulin once per day, the options are the same as for
multiple daily injections above
• Short-acting insulin should be given with the long-acting insulin doses that are
given before meals. Additional short-acting doses may be required especially if
BGL rises above 12-15 mmol/l.
• Some people decide to change to four injections per day (MDI or basal-bolus
plan) during their travel to make things simpler and more flexible and this is quite
a good idea.
Adjustments for those on an insulin pump:
• Adjustment is simple. Usually the basal rate is left the same during the flight and
boluses are given for meals and to correct high BGLs. At the destination the clock
on the pump is changed to local time.

Sleeping in
Sleeping in is part of the enjoyment of weekends and holidays. No particular changes
need to be made if the later injection time is within 1-2 hours of the
usual time.
Unfortunately though, diabetes does not allow your child to sleep in for a long time.
Sleeping in for longer can cause problems with low blood glucose levels if overnight
insulin is still acting or high blood glucose levels if insulin action is running out.
If your child wants to sleep in longer, then you need to check the blood glucose level
to ensure that this is safe and then arrange to wake at a set time later. It is generally
not advised that the usual routine be altered by more than two hours. Never take
insulin doses in bed and do not go back to bed between taking insulin and eating
breakfast. Giving the insulin later than usual in the morning can cause overlap with
the evening insulin, so if you do this you should compensate by either moving the
entire day’s routine later or reducing morning long-acting insulin and/or evening
short-acting doses.

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17: Travelling, holidays, camping and other special situations


Getting up earlier
No changes usually need to be made to insulin doses or food plans if the injection
time is an hour or less different from the usual time. For earlier starts than this, you
can:
• give an extra morning tea if all other meals are to be given at the usual times
or
• bring the whole day’s routine forward with extra testing in the evening to assess
the need for any extra food and best insulin dose.

Going to bed later


Usually eating an extra supper during the evening is sufficient; the amount depending
on what your child is doing at the time. Checking the pre-bed blood glucose level is
recommended and it needs to be above 6 mmol/l. The alternative is to reduce the
evening insulin if you know in advance that your child will be up later than usual,
especially if they are planning an active evening such as a school dance.

Eating out late


If you are going out for a meal at a restaurant or will be eating at a later time,
you can give your child supper or a snack at their usual dinner time and their
usual evening insulin and evening meal at the restaurant.

Staying over at a friend’s house


Children love to stay over at a friend’s house, but with diabetes this can create
practical difficulties and anxiety. Some planning can make this possible without
problems. The age of the child will make a difference in the planning that is required.
If your child stays regularly with friends or relatives, arrange for some diabetes
education or for them to read a resource like this one.
If your child can do blood testing and can use pens or draw up and give insulin with
a syringe, usually all that is required is that the host family receive simple advice about
meal requirements and timing and hypoglycaemia. They need to know how and when
to contact you or the diabetes team. They also need advice about what to do if an
emergency arises.
If your child uses syringes and can give an injection, but cannot draw up the insulin,
insulin pens for those occasions are the best option.

Diabetes camps
Children or adolescents who have diabetes are often very dependent on their parents
in caring for the diabetes and often do not know others of the same age with diabetes
or do not mix with them. It is not uncommon for children who have had diabetes for
a number of years to have never spent a night away from their parents. Diabetes
camps are good for children and adolescents for the following reasons:

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17: Travelling, holidays, camping and other special situations

• They meet make friends and socialise with other children with diabetes.
They will also realise they are not the only person in the world with diabetes.
• They learn to become more independent in diabetes care – a stepping stone
toward independent adult living. Children and adolescents learn how to care for
themselves and adjust their diabetes care for situations such as increased activity.
This often leads to children participating in other camps (e.g., school or sports
camps) and being able to have holidays away from their parents.
• They learn more about diabetes in general. All camps have an educational
component whether this is formal or informal learning.
• They increase their confidence in social and physical activities in a well-supervised
environment.
• They participate in a safe quality and fun recreational program.
Another important function of camps is to provide some respite for parents from the
daily responsibility of looking after their child with diabetes. Many children require
encouragement to go to camp initially, but end up having a wonderful time and gain
great benefit. Despite the name, camping does not usually involve staying in tents.
A variety of camps exist in different regions and catering for different age groups.

Children do not normally attend camp alone under the age of nine years.
For younger children (less than nine or ten years) there are weekend camps where the
child attends with one parent.
Diabetes Australia has established camping standards guidelines to ensure that camps
are run in a safe and professional manner. Camps have professional staff with
diabetes training. For information about camps that would be suitable for your
child, contact your diabetes educator, Diabetes Australia or the Juvenile Diabetes
Research Foundation.

School camps
Most children in primary and secondary school will want to attend school camps or
overnight excursions, which are usually two to five days long. This often makes people
worry about the diabetes care.
Most of these camps do not have any nursing staff, but medical facilities are usually
close by. Some parents attend camps as helpers and this may work well, but sometimes
children will not want this. Planning ahead should allow your child to attend camp
without any major problems.

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17: Travelling, holidays, camping and other special situations


Preparing for camp
Here are guidelines for preparing for camp or overnight excursions:
• Revise and refresh diabetes skills for your child (e.g., using pens, drawing up and
injecting insulin, blood glucose monitoring, testing for ketones, changing a pump
set). Children need to have basic diabetes skills to attend camps. In some cases
where children are not confident in drawing up or injecting, automatic injection
devices or insulin pens are a good option. Your educator will arrange extra
education before the camp if needed.
• Obtain the activities and meal program for the camp as early as possible and
discuss this with your diabetes educator or diabetes doctor. In most cases activity
levels will be higher than usual and lower insulin doses will be necessary. This is
usually in the range of 10-30 per cent less than usual doses.
• Discuss the food and meals with the camp organisers. Arrange for extra
carbohydrate food to be available so your child can treat hypos and prepare for
exercise.
• Provide teachers and/or supervisors with information about diabetes before the
camp (see chapter 14 ‘School and diabetes”). It is also useful if your child has one
or two friends who know about diabetes and hypos and can act as buddies to alert
teachers if there is a concern.
• Try to identify one teacher or supervisor who will take responsibility for any extra
supervision that your child needs.
• Arrange for a hypo pack or packs to be available at the camp, with instructions for
teachers and/or supervisors about its use (see chapter 14). Usually there will not
be staff at such camps who would be able to give a glucagon injection for severe
hypoglycaemia but if this occurs the Ambulance Service would be called and
ambulance officers would give glucagon or a glucose injection.
• Make arrangements so your child or a teacher can contact you (or their educator)
to discuss blood glucose levels and insulin doses while at camp.

Fasting, e.g., religious or other reason


Healthy nutritional plans and most diabetes management plans rely on regular
carbohydrate intake. However, sometimes there is a wish to participate in periods of
fasting. Examples include the religious activities of Ramadan and Yom Kippur, or
charitable and advocacy activities such as the “40 hour famine”.

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17: Travelling, holidays, camping and other special situations

People with diabetes or other significant medical conditions are usually excused from
fasting by their religions, but some people will still make a personal choice to fast.
Fasting is not recommended for younger children. For teenagers and adults this can
usually be done safely, following the following principles:
• Fasting for more than 12 hours is not recommended
• Think about your insulin plan and in particular which insulin doses are covering
food intake
• For people on insulin pumps, the approach is usually simple. Continue the pump
at the usual basal rates. Take meal boluses only when eating and use corrections
if needed. If BGL tends to run low while fasting, use a lower temporary basal rate.
• For those on a multiple daily injection plan, continue your usual basal or
long-acting insulin. Sometimes this may need a small reduction if total daily food
intake is less. Use injections of rapid or short-acting insulin only when eating or
if needed for corrections. Be careful about large doses of rapid or short-acting
insulin just before sleeping, since this can increase the risk of night hypoglycaemia
if the dose is misjudged.
• For those on an injection plan with 2 or 3 injections per day, both short and
long-acting insulins cover food through the day and will need to be reduced.
Extra doses of short-acting insulin may be needed when food is taken.
• In all cases, extra BGL monitoring is important to guide adjustment and to guard
against the increased possibility of hypoglycaemia

Associated video resource for this chapter


Spreading our wings – the diabetes camp experience
ERC Media, Educational Resource Centre, Royal Children’s Hospital,
Melbourne, 2005.
Experiences of diabetes camps told from the parents and child’s or
adolescent’s perspective
View via the link at www.kidsdiabetes.org.au

174 Caring for diabetes in children and adolescents


17: Travelling, holidays, camping and other special situations

17: Travelling, holidays, camping and other special situations


Common questions and answers

?
What should we do if our child gets sick when overseas?
Use the information in this resource on sick day management. If things
are not getting better you will need to see a doctor. You may have been
given a contact by your diabetes team before leaving home. Otherwise,
find the nearest children’s hospital, or large hospital with a children’s
department. If none is available nearby, ask for help to find an English-
speaking doctor or a doctor who speaks your language. Remember also
that you can phone home to your diabetes team who may be able to help
over the phone.

What should we do if our blood glucose meter is lost or breaks


? down when we are overseas?
Consider taking a spare meter. Alternatively, take some spare testing
strips with you which can be read by eye. These are less accurate than a
machine but will give a good guide. A few brands of these are available.
In many countries it will be possible to purchase a replacement machine,
but the meter might read the blood glucose in different units than you
are used to (1 mmol/l = 18 mg/dl).

My nine-year-old wants to sleep over at a friend’s house. He can


? give an injection but cannot reliably draw up. How can we
handle this?
It would be best to use insulin pens for this situation, which he should
be able to dial up or his carers can easily be taught to dial up or supervise.

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18: Insulin Pumps

Chapter 18 Insulin Pumps

Key Points
u Insulin pumps are now widely used in the management of type 1
diabetes and are a core therapy with evidence of significant benefits
u A
 pump is another way of delivering insulin under the skin,
although it may not suit all children or teenagers
u P
 rogressive technology improvements are expected to add further
benefits
u Y
 our diabetes team will discuss pump therapy with you and the
potential suitability

This chapter explains details of using an insulin pump for diabetes management.
However, as there are a number of different brands of insulin pump, the information
here cannot be brand specific. When you or your child starts an insulin pump,
additional individual information and education will also be given to you by the
diabetes team. Remember that information in other chapters of this book is also
relevant for insulin pump users.

What is an insulin pump?


An insulin pump is a small computerized device that delivers regulated amounts of
insulin continually under the skin. The pump is programmed to give small
background doses of insulin (basal insulin) continuously throughout the day and
night depending on the individual’s needs. Each time the person eats carbohydrate,
they activate the pump to give a burst of insulin (meal bolus) to cover the amount of
carbohydrate that they are going to eat. An extra bolus (correction bolus) can also be
given to treat a high blood glucose level. In this way the insulin pump simulates more
closely the way the pancreas would normally deliver insulin.
The insulin pump has a syringe in it which is loaded with rapid-acting insulin.
No long-acting insulin is used. The syringe is driven by the computerized pump
mechanism. This is attached by a plastic tube to a special plastic needle (cannula)
which is inserted under the skin usually of the abdomen or buttock region. This
cannula has to be changed every 2 or 3 days which is easily done at home. The pump
can be disconnected for short periods e.g.,. to have a shower, swim or play football,
but in general it remains attached to the person 24 hours a day.
It is important to remember that current insulin pumps are not automatic.
They have to be programmed by the user based on at least 4 to 6 blood glucose levels
per day and careful thinking about food and exercise patterns. Young children require
parents or carers to operate the pump, but older children and teenagers become
increasingly independent in operating the pump. In general, a pump requires more
work and thinking about diabetes than do injections, but with a number of potential
benefits. It is important for the person with diabetes to be motivated themselves to
go on a pump rather than being talked into it by others.

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18: Insulin Pumps
Your diabetes team will discuss with you if your child may be a suitable candidate for
a pump and help you to consider possible advantages and disadvantages. It may come
down to personal views and preferences as to whether people with diabetes like the
idea of an insulin pump. It is important to remember that modern insulin injection
plans can still give most people good diabetes control if they concentrate on the
routines and management of their diabetes.

Outline of insulin pump therapy


In general, people on insulin pumps manage their diabetes as follows:
• Basal rates (background insulin rates) are established that suit different time
periods throughout the day. Most people have between 4 and 6 different basal
rates, but occasionally more. The pump delivers this insulin continuously.
• Bolus insulin doses are given for meals and snacks. The amount of carbohydrate
that is eaten for a meal or snack needs to be fairly accurately estimated in grams
or exchanges. This amount is entered into the pump, allowing the pump to
calculate the amount of insulin required.
• Correction doses can be given at meal times or other times if the BGL is higher
than desired at the time. The BGL is entered into the pump, and the pump helps
calculate the correction dose.
• The blood glucose level should be tested at least 4 to 6 times per day, or at any
other time there is concern. Continuous glucose monitoring systems (CGMS) can
be used with some pumps and are likely to be increasingly used.
• High blood glucose levels must be taken very seriously and action taken quickly
to correct this, because there is no long-acting insulin being used.
Chapter
• The pump can be disconnected for short periods throughout the day e.g., contact
sport, shower, swim, but usually not for more than 2 hours.
• The insulin syringe, tubing and infusion cannula need to be changed every
18
3 days, but sometimes more often.
• Frequent contact with the diabetes team is needed initially, but this later settles
into a standard 3 monthly review if all is going well.
• Record keeping is important to monitor progress and to recognize the need for
adjustments. A variety of methods are available, including the increasing use of
electronic records and internet communication.

An insulin pump and tubing

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18: Insulin Pumps

Potential advantages of insulin pumps


For people who successfully make the change to a pump, there are a number of
potential advantages. These are discussed below.

Better blood glucose control and HbA1c


Many people experience smoother blood glucose levels and a fall in HbA1c with
pump therapy, but not all. Hypoglycaemia is less common in general with pumps,
although it remains a significant risk. Pumps may help stabilize diabetes for people
who work hard at their diabetes yet have difficult and unstable blood glucose control.

More accurate insulin delivery


The pump delivers insulin very accurately and simulates more closely the way a
healthy pancreas works. Insulin absorption is much more predictable than with
insulin injections. The pump can be accurately programmed to match the changing
needs of any individual. Only rapid-acting insulin is used in pumps.

Flexibility and lifestyle benefits


The insulin delivery of the pump can be altered to allow for many variations in
routine, eating patterns and exercise. This allows the times and amounts of meals
to be more flexible and allows sleeping in and other variations in routine to a much
greater extent. It also more easily allows for adjustments on sick days if the person
is not eating or is needing extra insulin. Many people enjoy how easy and discreet
pumps are for delivering insulin, compared to giving insulin injections with a pen or
syringe.

Potential disadvantages of insulin pumps


There are a number of potential disadvantages of insulin pumps for some users.

Being permanently attached to a ’machine’


Some people do not like the thought of having to be attached to the pump almost
constantly. The pump can be worn on the belt, kept in a pocket or concealed under
the clothing in a pouch. A quick-release connection allows the pump to be
disconnected easily for short periods e.g., a shower, swim etc. Nevertheless some
people cannot adapt to this permanent dependence on a machine.

More blood glucose testing


Pump users need to be prepared to do 6 to 8 blood glucose tests a day, sometimes
more. This is needed to ensure that the pump rates are correct and to help work out
how much of a bolus dose to give at meal times and to minimise the risk of high
blood glucose levels and ketones developing. Continuous glucose monitoring systems
are now available for use with some pumps, which give greatly increased blood
glucose information and can reduce the amount of finger-stick testing.

More rapid development of ketones or ketoacidosis


When a problem occurs with insulin delivery by the pump, ketones and ketoacidosis
can develop much more quickly because there is no reservoir of long acting insulin
in the body. Pump users are taught to watch for this and how to respond. This is
another reason why more frequent BGLs need to be done by pump users. In case of
pump malfunction, people always need to have insulin pens available to switch
temporarily to at any time needed.

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18: Insulin Pumps
Skin infections or irritation
Because the cannula is left under the skin for up to three days, irritation or infection
at the site can sometimes occur. This can be minimised by appropriate and careful
technique. Occasionally, some people are sensitive to the adhesive or tapes which can
cause skin irritation.

Cost
Your diabetes team will discuss how pumps may be accessed through private health
insurance or government subsidies. Partial subsidies are now available from the
Commonwealth Government for pumps purchase as well as NDSS subsidy of
consumables.

Diabetes management on a pump is a team effort


Most older children and teenagers adapt to the pump very quickly and are often
quicker to grasp new technologies and gadgets than their parents. However it is very
important that parents or other carers stay closely involved and interested in their
child’s diabetes. Just having a pump does not mean that more responsibility for
diabetes management can or should be shifted onto the child or teenager.
The degree of involvement of parents and other family members will vary between
different families. It may seem rather obvious to state these things but sometimes
teenagers or parents perceive starting on a pump as a handover of responsibility for
care to the teenager themselves. This is not the case and this needs to be a gradual
process over many years with parents maintaining an active role and interest. In
general parents should continue to have a role in:
• Checking and assisting with techniques of syringe filling and infusion set insertion
• Assisting with adjustment of basal and bolus doses, including adjustments needed
for exercise
• Ensuring that adequate BGL monitoring is being done and recorded and that
other record keeping is maintained
• Assistance at times of high BGLs or sick days
• Assisting with assessing carbohydrate content of foods and other aspects of food
planning
• Assistance with ensuring that an insulin pen with rapid-acting insulin is available
and carried at all times
• Assistance with management of hypos and ensuring adequate provision is taken
to avoid or minimize risk of hypos
• Assistance with communications with pump team and in organising and
attending hospital visits
• Assistance with maintaining adequate supplies of insulin (including availability of
long-acting insulin) , infusion sets, tapes etc
• Any other general aspects of diabetes and health management

Steps in commencing insulin pump therapy


Suitability for a pump:
This will be discussed with you by the diabetes team and it is important for you to
find out as much as you can in preparation. The diabetes team will provide you with

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18: Insulin Pumps

information and the internet is another good source. Remember that some people
with diabetes may not be suitable for pump therapy for a variety of reasons. You and
the diabetes team will need to make a joint decision about whether or not to start on
an insulin pump. Ultimately, it is your diabetes specialist that makes the
recommendation for commencing a pump, so they must be involved in your
discussions.
Two important factors for suitability are a demonstrated ability to monitor blood
glucose levels at least 4 to 6 times per day and a motivation to achieve and maintain
good diabetes routines and control.

Preparation for starting on the pump:


Once you and your diabetes team have decided that you are suitable for a pump, the
diabetes nurse educator will assist with the arrangements which need to include:
• Discuss with the pump team how arrangements will be made for purchase of the
pump and ongoing supplies. If this is going to be through your health fund, then
you will have to contact them to arrange pre-approval.
• Arrangements will be made for pre-pump education with your diabetes team.
You may be given specific tasks to complete (e.g., reading or on-line education)
before the date of the pump start.
• A date will be arranged for the pump start. Usually this is done as a day-only
hospital admission, but sometimes may require a longer stay. The person with
diabetes and at least one parent, guardian or partner need to be present also.
Much of the time is spent with technical training about the pump and pump
therapy.
• The diabetes team will set the starting doses of insulin for the basal and bolus
doses; these will be adjusted, especially over the first few days as things are settling
in.
• See your general practitioner and arrange to discuss your plans to go onto the
pump and arrange a referral letter, if needed

Wearing the pump


You will receive full instruction on the operation of your pump during your pump
start. Details are all contained in the instruction guide that comes with your pump
and you should keep this for reference. You will soon become very familiar with all
of the commonly used features on the pump.
It is important that the pump wearer is comfortable in where and how they wear the
pump. The various options will be discussed with you by the pump educator. Various
cases, pouches and accessories are available, including:
• Belt pouches and clips
• Pouches that are worn under the clothing, including waist pouch, thigh pouch,
leg pouch, bra pouch and sports guard pouch
• Pouches can also be sewn into clothing, e.g., pyjamas
Remember that the pump will have to be accessed to give boluses for eating and the
site needs to be accessible to check for any problems. Some pumps are available with
remote controls which may be preferred by some.
Many children simply carry the pump in their pocket and this is simpler and more
convenient than using pouches etc. This is possible by making a small hole in the
seam of the pocket through which the tubing can be passed.

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18: Insulin Pumps
Infusion sets and tapes
The pump delivers insulin via an infusion set which has a cannula on the end of it
and is inserted beneath the skin. The insulin, syringe and infusion set need to be
changed at least every 3 days, sometimes more often.
Your pump team will advise on the most appropriate type of infusion set for you.
There are a variety of sets available from different manufacturers with different
features, cannula lengths and tubing lengths.
It is usually most convenient to insert a new set after a bath or shower, when the skin
is clean and dry. This should be at least 3 hours before bed. The reason for this is so
that there is adequate time before bed to ensure that the new set is working properly
and BGLs are satisfactory.
Full instructions on loading insulin and inserting the particular set type will come
with each set and will be taught by your educator. Please note the importance of
hand-washing and a clean environment for changing a set. It is best to change a set
in a relaxed and unhurried environment.

Site selection and rotation


The abdominal (tummy) area is a good area since insulin absorption tends to be most
consistent. Avoid the belt-line and waist-line, any place that clothing would rub and
avoid a circle of about 4 cm around the umbilicus (belly button). Other sites can be
used including the upper, outer buttock or the thigh.
The site needs to be changed every 3 days at least, or sooner if there is any redness,
irritation or suspected problem with insulin delivery. Move well away from the
previously used site.

Disinfecting the skin and avoiding infection


Before inserting the infusion set it is important to wash your hands well with soap
and water and thoroughly disinfect the skin area using the recommended antiseptic.
It is important to use careful technique not to contaminate the insertion site after it
has been cleaned or any of the equipment. Infection at the site is a risk if appropriate
precautions are not taken. Any soreness, redness or swelling at the infusion site
indicates a need to insert a new infusion set at a new site without delay and remove
the old set. Full instructions are included with each infusion set. Make sure you clean
the top of insulin bottles with an alcohol swab when filling a new syringe.

Tapes and skin preps


Special skin preps and tapes are available for people who have sensitive skin or if you
need the tape to be extra sticky. It is important for the infusion set to be well secured
to avoid accidental dislodgment.

Infusion site and site problems


With care, infusion site problems can be kept to a minimum. However, most people
will experience a problem at the infusion site at some time. Possible problems
include:
1. Dislodgment, blockage or kinking of the cannula
This will happen from time to time, again more commonly with vigorous activities
and especially after direct knocks to the cannula site. You may see the tape or
cannula dislodged or sometimes leakage of insulin. Often the first indication that
something has happened to the site is high BGLs. Unexplained high BGLs always
requires a full check of the insulin syringe, pump, tubing and site. When no

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18: Insulin Pumps

explanation is evident, the insulin, syringe and infusion set should be changed
anyway as this is the most likely cause of the problem.
2. Sets not adhering well
Vigorous activities and sweating make this more likely. Some special preparations
are available if needed to help tapes stick more strongly. Different types of sets and
tape will sometimes stick better on some people. For any set adhesion problems
consult your Pump User Manual or your diabetes team.
3. Infection
Tenderness, redness, swelling or pus at the cannula site may all indicate infection.
If this occurs the site must be changed without delay and you should contact your
doctor or diabetes team. Antiseptic or antibiotic creams may be required or
sometimes oral antibiotics. The chance of infection is minimised by careful
handwashing and disinfecting when inserting the cannula and keeping the area
generally clean.
4. Irritation or allergy to tapes
The tapes used have low allergic potential, but some people may be sensitive to
them. Different sets and tapes are available if this is the case.
5. Air bubbles in the infusion tubing
It is important that the insulin is at room temperature prior to filling the syringe.
Make sure you spend time tapping the air bubbles out during the filling and
priming procedure. Check that the tubing is well attached to the syringe and that
the Quick-release is properly tightened. Tiny bubbles (like champagne bubbles)
do not affect the BGLs. One inch (2.5 cm) of air in the tubing is equal to
approximately 0.5 units of insulin, so unless there is a lot of air, there is no need
for concern. The air itself does no harm; rather it is the insulin that is missed
when air is infused that can cause the problems.
6. High blood glucose levels after a set change
If after a set change, blood glucose levels become high or a correction bolus does
not work, it is likely that there has been a problem with the insertion of the set.
Check the site for any insulin leakage, blood in the first part of the set or other
problems. Check that the tubing does not have large amounts of air in it and that
the quick release was done up properly. Check for any error messages on the
pump and that the pump is operational. Sometimes in lean people at certain sites,
where there is not much of a fatty layer beneath the skin, the cannula tip may hit
up against the muscle layer and this stops proper delivery of insulin. Pain at the
time of insertion and afterwards will often occur if this is the case. Some people
who are too lean on the abdomen will use the upper buttock where there is more
of a fatty layer.
If no other easily fixed problem is found, the set must be changed again.
When in doubt, change the set.

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18: Insulin Pumps
Disconnecting and reconnecting the pump
1. Disconnecting
Most infusion sets contains a quick release feature that allows the pump to be
disconnected for short periods e.g., vigorous sport, shower etc. Ordinarily the pump
should not be disconnected for longer than 2 hours, unless the pump team have
advised otherwise.
The pump must be disconnected for taking a bath as the temperature of a bath will
damage the insulin in the pump. The pump is usually disconnected for very vigorous
sports, contact sports and swimming. A completely waterproof pouch is available for
other watersports.
When disconnecting the pump for a bath or shower, leave the pump running and
keep the pump in a place that is safe, clean, cool and dry. Do not plug the infusion
set if the pump is left running.
When disconnecting outside the home the pump should be suspended and the
pump end plugged with the stopper or cover, if your set type comes with one.
At the skin, if your set type has a cover, use that when disconnected.
2. Reconnecting
When reconnecting, make sure the pump is re-started if it was suspended. If any of
the connections have become contaminated during disconnection, wipe with an
alcohol wipe before reconnecting. No priming dose is needed when reconnecting,
whether or not the pump was suspended.

Insulin types
Rapid-acting insulin is used in the pump, currently either NovoRapid (Novo
Nordisk) or Humalog (Eli Lilly), although other similar insulins may also become
available. This means that there is no long-acting insulin reservoir in the body and
this is why a pump or infusion set problem can lead quickly to rising BGLs if not
detected.
The rapid-acting insulin that is infused by the pump forms only a small reservoir
under the skin which is almost all absorbed over 3 to 4 hours. Unless a bolus of
insulin has recently been given this will be only a very small amount of insulin.
Your pump contains a feature that allows the estimated duration of action of insulin
to be set for each individual, as part of the insulin on-board and bolus wizard features
(see later). Usually this is set at 3 to 4 hours and your diabetes team will advise what
is best for you, taking into account your individual circumstances and pump model.

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18: Insulin Pumps

Setting the pump rates


The pump team will program your initial pump settings, including adjustment of any
alarms and safety features required. A maximum bolus dose and maximum basal rate
will be programmed for each individual to prevent the possibility of accidentally
giving too much insulin; these will need to be changed over time as a child grows and
needs more insulin.
In the following sections, details and examples of calculating pump doses are given.
Initially these calculations will be done by your pump team. With experience, you will
get a feel for how to adjust pump rates yourself.

Starting rates and total daily dose of insulin


Your starting doses will be individually set by the diabetes team, however the following
gives a guide as to how this is calculated. The pump delivers basal insulin continuously
24 hours per day for background insulin requirements. On top of this boluses or
bursts of insulin are given to cover carbohydrate food intake (carbohydrate bolus or
carb bolus) or to correct high blood glucose levels (correction bolus).
The total daily dose that the person is having on injections often needs to be reduced
by approximately 20%, because the pump is a more efficient method of delivery
insulin. Between 40 and 50% of this is given as basal insulin over 24 hours and the
rest becomes the bolus doses for food (see calculation below).

Basal insulin
Most people have about 40-50% of their total daily insulin requirement given as
basal insulin. At first this can be divided evenly across the whole day with the same
amount given every hour, but usually we start with a pattern that has 4 or 5 basal rates
which takes into account small variations in the need for basal insulin at different
times of the day. The individual basal pattern needed is strongly influenced by age
and puberty.

When setting and adjusting basal rates an important principle is that the basal rate
needs to change 3 to 4 hours before the desired change in insulin effect.

Example of basal insulin calculations:


• A person is having 60 units of insulin per day in total while receiving injections.
• For changing to a pump, the dose is reduced by 20% = 48 units. This is called the
total daily dose (TDD).
• Basal insulin – 45% of TDD = 22 units per day = 0.9 units per hour (or your team
may set a number of basal rates which vary slightly around this rate)
It is important to remember that you will not have to make these calculations.
They will be made for you and programmed into your pump. This information is
presented here so you understand the principles of how your pump is programmed.
Also, some individuals may have a basal insulin requirement outside the 40-50%
range, depending on their age and other particular circumstances.
Modern pumps also allow a number of different basal profiles to be set and after a
person is established on a pump, extra profiles may be programmed. For example – a
3 year old child may have one basal program with lower basal doses set for the
3 days he attends pre-school when he is very active, and a second one that he uses on
less active days at home. The use of such advanced pump features will be advised by
your diabetes team if needed.

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18: Insulin Pumps
Bolus doses
On top of the basal doses of insulin, boluses or bursts of insulin are needed. There
are 2 types of bolus:
1. c arbohydrate bolus (also called carb bolus or meal bolus) – to cover the amount
of carbohydrate that is going to be eaten
2. correction bolus – an extra bolus to correct a high BGL back down to target levels

Boluses for meals and snacks (Carbohydrate boluses)


Prior to starting on a pump you will see a dietitian to review your food plan. Often
this will change since the food plan you have been on may have been adjusted to suit
your injection pattern rather than your true dietary needs. On a pump, people will
often choose to have less between meal snacks and total carbohydrate requirement
may be a little less.
The “500 rule” is initially used by the diabetes team as a guide to calculate the insulin
to carbohydrate ratio required to cover meals or snacks for each individual.
This determines how many grams of carbohydrate 1 unit of insulin will cover.
This works as follows:
Divide the total daily dose of insulin that has been decided as the starting dose (TDD) into
500. The answer to this is the number of grams of carbohydrate that 1 unit of insulin will cover.
Example:
• TDD = 48 units.
• 48 divided into 500 = 10.4
• Therefore 1 unit of insulin will cover approximately 10 grams of carbohydrate
(thus the carbohydrate/insulin ratio = 10). This is often just called the carb ratio.
• This figure is programmed into the pump
• Thus if the person was going to eat 45 g of carbohydrate for lunch, a bolus of
45 / 10 = 4.5 units would be offered by the pump.
Some people find that this ratio is different at different meals. The commonest
variation is people who find that they need a stronger insulin to carbohydrate ratio
for their breakfast compared to other meals. In the above example, a 10% stronger
carbohydrate ratio would be 1 unit covers 9 g of carbohydrate. Also, the “500 rule”
does not work well for all people, especially the very young and other special
circumstances.
It is important to remember that you will not have to make these calculations.
They will be made for you and programmed into your pump. This information is
presented here so you understand how your pump is programmed.
These will be the starting doses for your meal carb boluses which will then be
modified if needed as you monitor and gain experience with the pump.
The pump allows different types of boluses to be set for certain circumstances.
Most people will use a normal bolus in which the bolus is all infused almost
immediately, usually over a minute or so. This bolus is still only absorbed into the
body over 3-4 hours. However the pump can also be programmed to give a dual wave
bolus (sometimes also called combination bolus) or a square wave bolus. A dual wave
bolus gives a specified percentage of the insulin immediately with the remainder
given over a longer period of time. A square wave bolus spreads the total amount of
bolus evenly over the time specified. This is discussed in more detail later.

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18: Insulin Pumps

Before any bolus it is wise to check, if possible, that your pump syringe has plenty
of insulin and there are no problems with your tubing or site by taking a quick look
at all of these. This ensures that you check these things regularly.

Correction boluses (using the insulin sensitivity factor)


A correction bolus is an extra bolus given at any time to correct a blood glucose level
that is unexpectedly high. Often this is given before a meal or snack as this is when
the BGL is done, in which case the correction bolus is added to the meal bolus. In
most pumps these calculations are done by the bolus calculator / correction wizard
and the amount of insulin to bring the BGL down to a preset target (usually set at 6
mmol/l) is calculated by the pump.
It is important to check that there are no problems with the pump and infusion site
and to check for ketones when the BGL is unexpectedly high (see sections later on
High BGL and Sick Days).

The “100 rule”


Correction boluses are initially calculated by the diabetes team using the “100 rule”
which determines the insulin sensitivity factor (sometimes called ISF, sensitivity
factor or correction factor). This works as follows:
Divide the total daily dose (TDD) into 100. This is an estimate of the number of mmol/l that
the BGL will fall by giving 1 unit of insulin.
This gives a starting point from which adjustments can be made by you and the
diabetes team. It is also possible in modern pumps to set different correction factors
or targets for different periods of the day. For example, a gentler correction factor may
be desired overnight when a young child may be more sensitive to insulin.
Example:
TDD = 48 units
48 divided into 100 = 2.1 (= insulin sensitivity factor or correction factor)
Therefore the BGL should fall by 2.1 mmol/l for every unit of insulin given
Thus if the BGL was 20 mmol/l and you wanted to bring it down to 6 mmol/l, this
would require 14/2.1 = a 6.7 unit bolus (this is the calculation the pump would do).
It is important to remember that you will not have to make these calculations.
They will be made for you and programmed into your pump. This information is
presented here so you understand what your pump is doing. Also, the “100 rule” does
not work well for all people, especially the very young and other special circumstances.

Negative correction
If the BGL before a meal or snack is lower than desired, the same formula will be
applied by the pump to reduce a bolus.
Following on from the above example:
If the BGL was 4.5 mmol/l pre-meal and you would like it to be closer to 6 mmol/l.
This is a desired rise of 1.5 mmol/l.
The pump calculates that giving 0.7 unit less will raise the BGL by 1.5 mmol/l,
therefore the pump subtracts 0.7 units from the planned meal bolus.
Again, it is important to remember that you will not have to make these calculations.
They will be made for you and programmed into your pump. This information is
presented here so you understand what your pump is doing.

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Insulin-on-board (also called active insulin)
Modern pumps assist by keeping track of how much insulin has been delivered that
is yet to act. i.e., Insulin sitting under the skin that is to be absorbed and act over the
next 3 to 4 hours. The computer algorithms that do this are slightly different in the
different pump brands, but the principles are similar. The key is setting a factor that
suits the individual for estimated duration of insulin action – usually in children this
is set to 3 or 4 hours, but sometimes outside this range for certain circumstances.
It is important to understand that the characteristics of the insulin cannot be
changed – this setting reflects how long the insulin acts for an individual which can
vary accordingly to age, size and other factors. Your diabetes team will advise the
suitable settings here. Some pumps have additional settings which will be discussed
with you by the diabetes team
Thus, when using a correction bolus, the pump will take into account when the last
correction bolus was given and how much of that will still be acting (i.e., will the BGL
still be falling without the need for an extra bolus). This will allow an adjustment of
the correction bolus to be made to avoid the BGL dropping too much and causing a
hypo (i.e., will avoid what is termed ‘insulin stacking’)
As an approximation, 25-30% of a rapid-acting insulin bolus dose is absorbed each
hour. Therefore after 1 hour 30% is absorbed , after 2 hours 60% and after
3 hours 90%.
Example:
If in the previous example the person had a correction bolus of 5 units given 2 hours
before the BGL was found to be 20 mmol/l. Insulin duration has been set for 3 hours
in this person’s pump. The pump then calculates that approximately 60% of this
previous dose has been absorbed, therefore 40% (=2 units) is still to act. Thus the
pump would suggest reducing the next correction bolus by 2 units. (This example
presumes that you have checked there is not an insulin delivery or site problem and
that the carb bolus was correct).

The bolus wizard or bolus calculator – examples


We have discussed how the pump software assists the calculation of a bolus dose to
cover a the carbohydrate in a meal and also a blood glucose correction. Here are some
more examples of how the pump calculates for 3 common situations:

1. Correction bolus, not eating at the time


The current BGL is entered.
The wizard calculates how much insulin is required to bring the BGL down to the
target (usually set at 6 mmol/l) using the sensitivity factor (correction factor) set in
the pump.
The wizard will then deduct any insulin-on-board or active insulin that has recently
been delivered and is yet to act.
A dose will be offered which usually the user will accept, but this may be modified by
the user if desired (e.g., may not want to have a full correction just before sport)

2. Eating and correcting of BGL if above target


The current BGL is entered.
The amount of carbohydrate about to be consumed is entered.
The wizard calculates how much insulin is needed to cover the amount of
carbohydrate, using the carbohydrate factor set in the pump for the individual.
The wizard also calculates how much insulin is required to bring the BGL down to
the target if needed and deducts any insulin-on-board.

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A dose will be offered which is a carbohydrate bolus plus correction. Usually the user
will accept this dose but it can be modified by the user if desired.

3. Eating and a negative correction if the BGL is below target


If the BGL is less than the target e.g., say 4.5 mmol/l and target is set at 6 mmol/l,
the pump calculator will subtract a small amount of insulin from the meal bolus to
assist the BGL to drift back up to target. This is often called a negative correction.
The current BGL is entered.
The amount of carbohydrate about to be consumed is entered.
The wizard calculates how much insulin is needed to cover the amount of
carbohydrate, using the carbohydrate factor set in the pump for the individual.
The wizard also calculates how much insulin should be subtracted to have the BGL
rise back to target
A dose will be offered which is a carbohydrate bolus, with the correction subtracted.
Usually the user will accept this dose but it can be modified by the user if desired.
Practical example:
James has the following settings in his pump:
Carb factor of 15 g (meaning 1 unit cover 15 g of carbohydrate)
Correction factor (or ISF) of 3 (meaning 1 unit lowers the BGL by 3 mmol/l)
Target BGL 6 mmol/l; duration of insulin action 3 hours
He does a BGL which is 9 mmol/l. He is going to eat 45 g of carbohydrate.
He has not had a correction bolus in the last 3 hours.
For the 45 g of carbohydrate, the pump calculates 3 units; i.e., 45/15
To correct from 9 mmol/l to 6 mmol/l, the pump calculates 1 unit; i.e., (9-6)/3
The pump offers a dose of 4 units which James can accept (usually) or manually
over-ride (only if special circumstances, e.g., he is about to play sport)
If in the last 3 hours he had also had a correction, the pump would have subtracted
any active insulin (also called insulin-on-board) from the correction.

Adjusting the pump rates


The pump rates that you start on are likely to be adjusted over the first few days or
weeks and then from time to time depending on age, growth, changes in activity and
diet etc. The aim is that you will gain experience in making these changes and your
diabetes team will always be available to guide you.
Adequate blood glucose testing and keeping good records is essential to allow
adjustment of insulin pump therapy. Records can be kept manually, but there is
increasing use of computerized pump and blood glucose records through software
provided by pump manufacturers. Your diabetes team will advise you about these.
Continuous glucose monitoring (CGM) can also assist with pump adjustments and
may be recommended by your diabetes team.

Adjusting basal rates


Most people will end up on more than one basal rate for the 24 hour period.
This takes into account different basal insulin requirements at different times of the
day. The total daily amount of basal insulin is usually between 40 and 50% of the
total daily dose (TDD), sometimes a little higher or lower in certain circumstances.
If your total daily basal insulin is outside this range you may have an imbalance and

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should consult your pump team. Basal rates will be tested in the first few days that
you start the pump and at subsequent times when patterns of highs or lows suggest a
need to test and change.
A basal rate that is too high is suggested by frequent lows at a similar time of day,
a drop in BGL when a meal is skipped, the need for excessive food intake to avoid
frequent hypos or excess weight gain.
A basal rate that is too low is suggested by frequent highs at a similar time of day,
a rise in BGL when a meal is skipped or by the need for frequent correction boluses
for high BGLs.
Basal rates can be checked in a systematic manner if needed by using basal rate tests.
When testing the basal rate, the aim is to find a rate that keeps the BGL steady or
falling only slightly when no carbohydrate-containing food is eaten. Basal rates are
tested before boluses are given and should be done on a fairly typical day where there
have not been unusual hypos or high BGLs.
To test the night time basal rate:
Start at bedtime, which needs to be at least 4 hours after your last insulin bolus and
only if the bedtime BGL is in the target range of 6-10 mmol/l. Skip supper or have
no carbohydrate. Test the BGL at bed-time, 2 or 3 am and on waking. A good basal
rate will keep the BGL level overnight or drop it only 1 to 2 mmol/l.
To test the basal rate during the morning:
Start the test when your BGL is between 4 and 8 mmol/l. Skip breakfast (or have no
carbohydrate) and therefore have no breakfast bolus. Test at the start and every 1-2
hours for 5 hours. A good basal rate will keep the BGL level or drop it only
1 to 2 mmol/l over this period.
To test the basal rate during the afternoon:
Start the test when your BGL is between 4 and 8 mmol/l. Skip lunch (or have no
carbohydrate) and therefore have no lunch bolus. Test at the start and every
1-2 hours for 5 hours. A good basal rate will keep the BGL level or drop it only
1 to 2 mmol/l over this period.
To test the basal rate during the evening:
Start the test when your BGL is between 4 and 8 mmol/l. Skip dinner (or have no
carbohydrate) and therefore have no dinner bolus. Test at the start and every
1-2 hours for 5 hours. A good basal rate will keep the BGL level or drop it only
1 to 2 mmol/l over this period.
• If the blood glucose rises above target during any of these tests, increase the basal
rate covering that time slightly, usually by about 10% of the existing rate (usually
0.025 to 0.05 units per hour adjustment in smaller children and 0.05
to 0.1 units per hour adjustments in older children and teenagers) and retest
on another day.
• If the blood glucose falls more than slightly (1-2 mmol/l) during any of these tests,
decrease the basal rate covering this time slightly, usually by about 10%
of the existing rate and retest on another day.
• Remember that changes in basal rates need to be made 3 to 4 hours before the
desired change in insulin action because of the lag in effect of absorption from
under the skin.

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Adjusting carb boluses


Your diabetes team will give you initial settings for your carbohydrate factor i.e., the
setting in your pump that indicates how many grams of carbohydrate is covered by
1 unit of insulin This may have to be adjusted from time to time depending on how
well it is working.
A correct carb or meal bolus is that which returns the BGL to within 2 mmol/l of
the starting BGL after about 3 hours.
If a low occurs within this period then a weaker carb bolus setting is needed. If the
low occurs within 1 to 2 hours of the bolus a larger change will be needed than if it
occurs between 2 and 4 hours after the bolus. Generally, make a change of about
10-20% of the current carbohydrate factor and then evaluate that over several days.
Remember that the lower the carbohydrate factor, the stronger is the bolus for the
same size meal, for example:
Carbohydrate factor 10 g (means 1 unit covers 10 g of carbohydrate) – if 40 g is eaten,
4 units of insulin is given
Carbohydrate factor 12 g (means 1 unit covers 12g of carbohydrate) – if 40 g is eaten,
3.3 units of insulin is given

It is very important that you understand which direction to adjust the carbohydrate
factor if needed. If in doubt, check with your diabetes team.

Sometimes people find they are more or less sensitive to boluses at a certain time of
day. If this is the case a different carb ratio may be required for this meal, although it
is usually unnecessary to have multiple carbohydrate factors.
Example:
Sam is 14 and his current insulin to carbohydrate ratio is 10 (meaning that 1 unit of
insulin covers 10 g of carbohydrate). He finds that his blood glucose levels are
generally fine 2 to 3 hours after meals, except after breakfast when his blood glucose
levels are generally elevated, around 9-13 mmol/l. He adds a second carbohydrate
factor (about 10% stronger) to cover breakfast and makes this 9 (meaning 1 unit of
insulin covers 9 g of carbohydrate)
To understand the effect of this adjustment: for a 45 g carb intake, the wizard will
now calculate 5 units at breakfast time and 4.5 units at other times for Sam.

Adjusting the correction factor or insulin sensitivity factor (ISF):


These settings will also be made by your diabetes team at the time of the pump start,
but will need to be adjusted from time to time.
An appropriate correction factor will bring a high BGL down to target within
2 to 3 hours, without causing hypoglycaemia.
If the BGL is not coming down adequately with one or more corrections, this suggests
that a stronger correction factor is needed. If the BGL comes down too much or too
quickly, this suggests that a weaker correction factor is needed. Generally, make a
change of about 10-20% of the current carbohydrate factor and then evaluate that
over several days.
Remember that the lower the correction factor or ISF, the stronger is the correction,
for example: A 4 year old might have a correction factor (ISF) of 8 (meaning that
when correcting, 1 unit of insulin lowers the BGL by 8 mmol/l. Therefore, to come
down from 20 mmol/l to 6 mmol/l, the pump would suggest (20-6)/8 = 1.75 units
of insulin.

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18: Insulin Pumps
A 15 year old might have a correction factor (ISF) of 2 (meaning that when correcting,
1 unit of insulin lowers the BGL by 2 mmol/l. Therefore, to come down from
20 mmol/l to 6 mmol/l, the pump would suggest (20-6)/2 = 7 units of insulin.

It is very important that you understand which direction to adjust the correction
factor (ISF) if needed. If in doubt, check with your diabetes team.

Example:
6 year old Sam’s corrections seem too weak and his blood glucose level is not falling
enough after corrections. His current correction factor (ISF) is 7 (meaning that
1 unit of insulin lowers the glucose by 7 mmol/l). His mum changes this to 6.3
(meaning that now 1 unit of insulin lowers the BGL by 6.3 mmol/l, a strengthening
of about 10%).
To understand the effect of this adjustment: to correct from a BGL of 14 mmol/l to
his target of 6 mmol/l
Before adjustment – the pump wizard would have calculated 1.14 units
After adjustment – the pump wizard will calculate 1.27 units

Keeping a record of pump rates and changes


Pump settings will change from time to time and it is important that you keep a
written or electronic record of these. This is because if the pump is damaged or
fails, you need to know what to program into a replacement pump when it arrives.
We suggest that you keep a written record of settings and changes in a book at home
or regularly use the electronic downloading facility of your pump to keep these
records.

Monitoring and target ranges


Blood glucose monitoring
Successful use of a pump requires an adequate amount of blood glucose monitoring,
usually 6 to 8 per day minimum but preferably more. This information is required to
know how to adjust pump doses and to detect unexpected high readings and possible
insulin delivery problems.
A variety of blood glucose monitors are suitable, however it is preferable for insulin
pump users to have a meter that can also measure blood ketones.
It is important to keep a detailed diary record of blood glucose levels, ketone tests,
basal rates and boluses, carbohydrate exchanges and exercises. This can be achieved
in a number of ways:
1. Blood glucose diaries
2. Computer spreadsheets
3. Software that comes with the pump that allows electronic records to be kept, and
in some cases, allows communication via the internet with your diabetes team.
Your diabetes team will recommend the methods most suitable for you, but in general
there is a strong move towards using electronic and internet based technologies to aid
the recording and analysis of pump settings and BGLs.
All BGLs need to be entered into the pump or pump system (depending on the type
of pump), even if no bolus is about to be given. This allows the pump software to
contain a full BGL history which is important for reviews and adjustments.

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At first up to 8 BGL readings will be required routinely per day, with extra readings
if something of concern is happening. The usual times will be:
• Before breakfast
• Before morning tea or 2 hours after breakfast
• Before lunch
• Before afternoon tea or 2 hours after lunch
• Before dinner
• Before supper or 2 hours after dinner
• Late evening
• 3am
Later this may be able to be reduced to 4 to 6 BGLs per day by omitting routine 3 am
readings and one or more of morning tea, afternoon tea and supper. It is essential
however to always test the BGL before main meals so that you can ensure that the
correct bolus (carb bolus ± any correction bolus) is given.

BGL targets
Target ranges for BGLs for pump users are generally as follows. These are a little lower
than for most patients on injections, although will be individualized by your diabetes
team as needed.
Before meals and snacks 4 to 7 mmol/l
2 hours after a meal 5 to 9 mmol/l
Bedtime 5.5 to 8 mmol/l
3am 5 to 8 mmol/l

Continuous glucose monitoring systems (CGMS)


Continuous glucose sensors are now available which can be used alone or integrate
with some pumps. These sensors are placed under the skin, much like a pump set is
inserted, and sense the glucose level in the layer under the skin. This is then converted
to a blood glucose value and is displayed on the device. Sensors now last up to 6 days
before they need replacing. When CGMS is used with a pump, this is termed
‘Sensor-augmented pump therapy’.

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When people use continuous blood glucose sensors, less fingerprick BGLs may be
required, but at least 2 to 3 per day are still needed. It is important to remember that
the CGMS measure is not as accurate as a finger-prick BGL and there may be delays
in recording changes in glucose levels, especially if BGL is rising or falling rapidly.
The most important information that can be obtained from CGMS is about patterns
and trends.
CGMS devices also allow high and low alarms to be set and this can be useful as a
warning. We are likely to see an increase in the use of CGMS as technology improves
and costs reduce. Currently, some people use CGMS regularly or continuously, while
some use it intermittently to check on their patterns and make adjustments and rely
on more fingerpricks at other times.
Your diabetes team will discuss with you the way in which you may be able to use and
access CGMS.

Insulin pump with CGMS device which communicates wirelessly with the pump

How to interpret and respond to CGMS information (information from


Medtronic – REAL-Time methodology for starting patients on continuous glucose
monitoring):

At the time of printing, one CGMS system is currently available in Australia


(Medtronic CGMS), but more are likely. The Medtronic CGMS device records the
glucose level every 5 minutes, so in effect this is a total of 288 readings per day.
CGMS often reveals patterns that people have not been aware of; for example, rapid
rise after some meals. It is important to understand when and how to respond to
these. The following is a basic guide to interpreting CGMS information only, and you
will be given more information and training if you start CGMS.
While the actual BGL is of interest, the trend is the most important thing.
The Medtronic CGMS device gives an indication if the BGL is rising slowly or rapidly
or falling slowly or rapidly by the use of one or two arrows. The time of day and
relationship to food, exercise and insulin doses are important factors in interpreting
the data.

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CGMS arrow Overnight Pre-meal After meal After meal


indicators (about to eat, (early, first (late, second
more than 90 minutes) 90 minutes)
3 hours since
last meal)

  GL
B Take action Probably fine Probably fine Probably fine
falling

 BGL Take action Take action Take action Probably fine


falling quickly
quickly

 GL
B Probably fine Probably fine Probably fine Take action
rising


BGL Take action Probably fine Probably fine Take action
rising
quickly

Probably fine: no action needed except normal surveillance


Take action: watch carefully, check again soon with fingerstick BGL; extra glucose or
insulin may be needed
Take action quickly: confirm with a finger stick reading and treat with glucose or
insulin as needed
 Indicates BGL has decreased 1.1 to 2.2 mmol/l over the last 20 minutes
 Indicates BGL has decreased more than 2.2 mmol/l over the last
20 minutes
 Indicates BGL has increased 1.1 to 2.2 mmol/l over the last 20 minutes
 Indicates BGL has increased more than 2.2 mmol/l over the last
20 minutes
Other important principles with CGMS:
• It takes time to gain experience and understanding of CGMS
• Initially people are often surprised at how much fluctuation in BGL they see
• Don’t over-react to changes
• Initial recommended settings for the low alarm is 4.5 mmol/l and for the high
alarm is 13.3 mmol/l

Hemoglobin A1c targets


Recommendations are the same as for patients on insulin injections and is less than
7.5% at all ages. However, the lower the better, provided that there are not significant
hypoglycaemic episodes occurring.
Even if this target cannot be achieved at times, any lowering toward this is associated
with significant reduction in risk of long term complications.

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Measuring ketones
It is important to measure ketones whenever the BGL is 15 mmol/l or above,
or during any illness. High blood glucose with ketones indicates insulin deficiency
which needs to be acted on without delay (see later). In these situations continue
measuring ketones every 2 to 4 hours until they disappear.
Ketones are best measured in the blood using particular blood glucose meters that
measure BGL and can also measure blood ketones with separate test strips. The
measurement of blood ketones is preferred as this gives a much earlier warning of
ketosis and changes in ketone levels. Ketones can also be measured in the urine using
ketone test strips if blood ketone testing is not available.

Food and carbohydrate counting


It is s a good idea for all people starting on a pump to be reviewed by the diabetes
dietitian before the start date and there will usually also be dietary education during
the pump start process.
There are some particular points about food for pump users:

Carbohydrate counting
• Counting carbohydrate quantities (in grams or exchanges) is particularly
important for people using pumps. It is very important to know how many grams
of carbohydrate or exchanges (one exchange = 15 grams of carbohydrate) you are
about to eat, since the bolus of insulin is adjusted accordingly. In general, all
carbohydrate eaten should be bolused for, unless there is a specific reason not to,
e.g., when treating a hypo or before sport.
• To assist with precision of carbohydrate counting, it is recommended that you use
standard household measures (measuring cups, spoons and kitchen scales) to help
work out serving sizes when you first start on a pump. Afterwards, it is still a good
idea to measure foods sometimes to make sure that you are estimating correctly,
especially as your child grows and eats more.
• Try to estimate as accurately as possible – even a 5 g amount of carbohydrate can
make a difference and should be estimated.
• Some meals are hard to quantify the amount of carbohydrate, especially restaurant
meals and others where you cannot know the ingredients. All you can do in this
situation is make an estimate (under-estimate if anything) and make a correction
later if needed.
• It is important to have a good knowledge of reading food labels
• Your pump will be programmed with your carbohydrate factor/s and you will
generally use the bolus calculator or wizard to assist in determining the bolus dose
to cover a given amount of carbohydrate

Square and dual-wave boluses


• You will probably notice that different carbohydrate-containing foods have
different effects on your BGLs and this is the concept of glycaemic index
(discussed in chapter 6).
• A low glycamic index meal (i.e., carbohydrate is absorbed slowly and over a longer
period of time) may be best suited to a dual wave (also called combination wave)
bolus. In this type of bolus, a proportion of the calculated insulin dose is given
immediately and the remainder is delivered gradually over a longer period.
Low GI / high fat meals are often in this category.

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Example: Justin knows that when he has pizza on Friday nights, a standard bolus
tends to make him have a low BGL early on and then a high BGL hours later.
This is because the pizza meal is high in carbohydrate, but low in GI. His dietitian
advises him to try a dual wave bolus. He tries a dual wave bolus with 50% of the
insulin given immediately and the remaining 50% over the next
4 hours. He finds this keeps his BGL smoother and nearer to target.
The parameters chosen could be adjusted as needed and might need to be
different for other people or other meals. Your dietitian wll advise.
• A square wave bolus delivers the calculated insulin bolus over a longer period of
time as set by the user, without an initial bolus immediately. This can be useful
for a long meal or extended snacking and is also helpful for some individuals with
delayed gastric emptying (rare in young people).

Flexibility with food intake on a pump


• Pump users do not have to eat between meal snacks (mid-meal snacks) and often
this suits teenagers and young adults. Your dietitian will advise.
• Meals and snacks can be more flexible, but avoid the temptation of having no
routines as this will make good control difficult to maintain.
• Be careful of the temptation to eat lots of extra snacks. Even though with a pump
these can be covered with extra insulin boluses, they will lead to excessive weight
gain.
• Healthy balanced eating and regular exercise are important in assisting with blood
glucose control and maintaining a healthy weight.

High blood glucose levels and sick days


High blood glucose levels
High blood glucose levels will occur from time to time and have to be taken very
seriously in pump users, more so than people on injections. This is because pump
users do not have any background reservoir of long-acting insulin and diabetic
ketoacidosis can develop more quickly.

It is essential for pump users to always carry rapid-acting insulin in a pen or with a
syringe that can be given if there are problems with the pump or infusion set.

Reasons for high blood glucose levels may include:


1. Problems with the infusion site, cannula, tubing, syringe, insulin or pump –
ALWAYS CHECK FOR THESE FIRST
2. Extra carbohydrate intake, not adequately covered by a carb bolus
3. A missed carb bolus
4. Illness e.g., infection, causing BGLs to rise
5. Basal rates or carb boluses too low

In the event of an elevated BGL (15 mmol/l or above), do the following:


1. Immediately check for problems with the pump or delivery system. Starting by
checking the infusion site for redness, swelling or leaking. Check along the
infusion line for kinks or leaks. Check that there is still insulin in the pump
syringe and check the pump for error messages. The operation of the pump can
be checked by DISCONNECTING your infusion set and setting a priming dose
of 5 units and watch for drops coming out of the line.

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If there is any doubt about the insulin (e.g., temperature damage), infusion set or
cannula, change these and insert in a new site without delay. If you don’t think
your pump is working, remove the pump and infusion set and proceed to give an
injection of rapid-acting insulin with a pen or syringe.
2. Check for ketones (blood preferred, or urine) if BGL is 15 mmol/l or above.
3. How you proceed will depend on the ketone result:
If ketones are negative or small If ketones are moderate or high (urine)
(urine) or less than 0.6 mmol/l or more than 0.6 mmol/l (blood), or
(blood) you don’t think your pump is working
• Try a correction bolus with the • You may have a pump delivery problem
pump. or be developing a significant illness
• Test the BGL hourly • Use injected insulin given with a
• Drink extra low calorie fluids syringe or pen to correct the blood
glucose level. The dose can be
• If BGL is lower after 1 hour,
calculated as either:
recheck again in 1 to 2 hours to
decide if another correction bolus • 10-20% of total daily dose (use the
is needed 20% dose if ketones are moderate
to large in the urine or >1.5mmol/l
• If the BGL is not improved 1 to
in blood), or;
2 hours after the first bolus proceed
to give an injection with a pen or • By calculating a dose using the
syringe (see column 2). i.e., do not correction factor that your pump
attempt multiple corrections with uses (sometimes with the addition
the pump if the BGL is not of an extra 10-20% of the
falling – use a pen or syringe calculated dose because the body is
injection so you know 100% less sensitive to insulin in this
that the insulin is getting in. situation, especially if moderate to
large ketones are present*)
• Extra rapid-acting insulin doses can
be given every 2 hours if needed.
• Drink extra, low calorie fluids or water
• Test the BGL hourly
• Replace the insulin in your pump
and infusion set and cannula, but until
the situation is under control you
cannot use or rely on your pump
• If after 2 hours there is no
improvement or you suspect a
significant illness call your diabetes
team or doctor
• If after 2 hours the BGL is improved
you can resume the use of your pump.
Remember if you now use the pump to
correct, it does not know what doses
were given by injection and when.
If within 3 hours of a pen injection
you may need consider reducing the
correction bolus suggested by the pump.
• If at any time your BGL remains
high, or ketones persist or you develop
nausea, vomiting or abdominal pain,
call your diabetes team urgently or
proceed to hospital immediately.

* Y
 ou may find that during periods of illness you need larger boluses than your
“usual” correction boluses to overcome the insulin resistance that can occur or use
temporary higher basal rates.

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Example:
10 year old Kate tests her BGL on waking and finds the level to be 21 mmol/l and
her ketones 1.5 mmol/l. On checking, she finds that her set has become dislodged.
Her TDD on the pump averages 32 units and her correction factor is 3.5 (meaning
that 1 unit of insulin lowers the BGL by 3.5 mmol/l when correcting). She needs to
give a pen injection and can calculate this in one of 2 ways which usually gives a
similar suggested dose:
1. 10-20% of TDD. Since ketones are only moderate she opts for a dose of 4 units,
which is between 10 and 15% of her TDD, or
2. using the correction factor from the pump, to bring the BGL down from 21 to
6 mmol/l, calculates as (21-6)/3.5 = 4.2, so again 4 units.

Sick days
Most pump users will have previous experience of dealing with sick days, and general
principles are covered in chapter 10. Important points are summarized
here, especially as they apply to pump users:
• Illnesses can cause high blood glucose levels (usually viral or bacterial infections with
fever), or low blood glucose levels (usually gastroenteritis illnesses)
• Have a sick day kit available which should include: extra supplies for BGL and
ketone testing, rapid-acting insulin and pen or syringe, glucagon for injection,
sugar-containing and low calorie fluids, a thermometer, medication for fever,
e.g., paracetamol, contact numbers for your doctors and pump team
• Never omit insulin. Even if you are unable to eat you still need to have some
insulin (see below for adjustments). Keep the pump on unless you have switched
to insulin via injections.
• Test the blood glucose more often, every 2 hours or so during the illness
• Test for ketones in the blood (preferred) or urine whenever the blood glucose is
above 15 mmol/l and continue checking every 2 to 4 hours until ketones are
cleared
• Treat the underlying illness – see your doctor if the cause of the illness is unclear
or you are very unwell or becoming sicker
• Drink more fluids (water or low calorie) if the BGL is high and/or ketones are
present. This will help the BGL fall and ketones to clear.
• Parents or partners should take over or assist with management and decision
making if the person on the pump is too unwell to make appropriate decisions
• If blood glucose levels are high (above 15 mmol/l)
Give extra boluses of insulin to bring the BGL down – use pump or pen
depending on whether significant ketones are present as outlined in the earlier
table. Extra doses may be required as often as every 2 to 3 hours. It will often be
necessary to also increase the basal insulin rate during an illness where BGLs are
tending to be high. Use the temporary basal rate to increase the basal to
125 to 150% of the usual basal; set this for 4 or 6 hours initially and then review,
based on BGL progress.
• If blood glucose levels are low
Treat hypos in the usual way. If you are eating and drinking less your meal boluses
will be less anyway. If you are not absorbing food well because of the illness, carb
boluses may need to be even less than your usual ratio – consider weakening by
25% in the first instance. If BGLs continue to trend low, it may be necessary to
reduce the basal rate. Use the temporary basal rate to decrease the basal rate to
50 to 75% of the usual basal rate; set this for 4 or 6 hours initially and then
review, based on BGL progress.

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18: Insulin Pumps
• Call for help or go to the hospital if:
• Persistent nausea or vomiting or becoming more unwell
• Unable to clear ketones
• Unable to keep BGL below 15 mmol/l or above 4 mmol/l
• You are worried, exhausted, too unwell to decide on doses or just don’t know
what to do next.

Sick day examples:


Example 1:
Sarah is unwell with tonsillitis. Despite eating little her BGLs are running high.
Corrections have partially worked.
Her mum runs a temporary basal rate of 150%, initially for 4 hours, with frequent
BGL monitoring.
Example 2:
Mario has gastroenteritis. Vomiting has stopped and he is drinking but still has some
diarrhea. He sips Gastrolyte during the day.
His mum finds that adequate BGL is maintained using temporary basal rate of 50%
until he starts feeling better that evening.

Hypoglycemia
All people with diabetes will have hypoglycaemia (hypos) at times.
Hypoglycaemia can occur for the following reasons:
• Too much insulin
• During or after exercise
• Eating too little carbohydrate or overestimating the carbohydrate content
of food
• Using large or frequent boluses to bring down high BGLs
• After alcohol intake
Overall, most successful pump users have less hypoglycemia, particularly less episodes
of severe hypoglycemia. However hypos are still a very important issue. Pump users
may experience more subtle symptoms of a hypo, thought to be because of a
reduction in overall BGLs and less extreme BGL swings. Most also find that less
carbohydrate is needed to treat a hypo, compared to when they were on injections,
however this partly depends on the cause of the hypo.

Treating a mild hypo


The amount of carbohydrate will depend on the size of the person and the reason for
the hypo episode; hence a range is given as was also discussed in chapter 8
‘Hypoglycaemia’. Slightly lower amounts of carbohydrate treatment for hypos are
suggested for pump users, but it is important that you learn what you or your child
needs for their individual circumstances.
1. Take 8 to 15 grams (half to one exchange) of fast-acting carbohydrate, such as:
• Glucose tablets 8 to 15 grams
• Fruit juice, ordinary soft drink or cordial – 100 to 200 mls
• Lucozade – 50 to 100 mls
• 2-3 teaspoons of sugar or honey
• Jelly beans: 3 to 5 large or 6 to 10 small (note – jelly beans vary in size)

Caring for diabetes in children and adolescents 199


18: Insulin Pumps

(Note: avoid the use of glucose tablets, jelly beans or other sweets in children under
5, because of choking risk)
2. Repeat the BGL in 15-20 minutes. If not above 4 mmol/l, repeat the treatment
3. Often it is not necessary to have additional slow-acting carbohydrate since this
may make the BGL overshoot. This will depend on whether a meal is due soon
and the circumstances of the hypo. If vigorous exercise was a contributor, there
has been more than one hypo that day, the BGL was very low or a significant
bolus has been recently given, it is wise to eat extra slow-acting carbohydrate
as well
4. If a hypo occurs close to when a meal is due, treat the hypo first and recheck the
BGL. Provided that the BGL has come up and there is no known reason to
suspect further lows, usually the normal carbohydrate bolus for the meal would
be given. If the BGL is slow to come up, it is wise to delay the meal bolus and
consider reducing it a little.

Treating a severe hypo


In the event of a severe hypo with coma, seizure or where the person is too drowsy to
safely eat or drink, a glucagon injection must be given and the ambulance called. The
pump should be disconnected (using the quick release) if possible, but this is not
essential. The diabetes team should be contacted without delay.

Frequent or recurrent hypos


This will usually mean that there is a major problem with basal rates or bolus doses.
Reduce your total daily dose (TDD) by 10% by reducing your basal rates and
weakening your carbohydrate bolus and correction factor (insulin sensitivity
factor) all by about 10% and contact your diabetes team for further advice.
A recalculation of your basal rates and bolus doses will be needed.

Hypoglycemia unawareness
As mentioned above, hypo symptoms may not be as obvious in pump users but
should still be present and easily recognised. If you find that you are not recognising
lows that are only evident on testing or when pointed out by others, this is
hypoglycaemia unawareness. You should discuss with your diabetes team without
delay. You will be able to continue with the pump, but target blood glucose levels will
be raised for safety and to allow hypoglycemia awareness to return.

Exercise
Since exercise generally lowers the blood glucose during and after, adjustments are
made by having less insulin, more carbohydrate, or a combination of both. The
amount of adjustment required depends on the duration and intensity of the
exercise. Clearly, mild exercise and short duration will require less or perhaps no
adjustment compared to intense exercise and long duration which may require major
changes.
Adjusting for exercise is very individual and doing extra BGL tests before, during and
after exercise will help guide you. Remember that high intensity exercise for short
periods sometimes puts the BGL up temporarily due to a “stress or adrenaline
response”, but this usually falls afterwards without the need for a correction dose.
The pump is best left on for exercise with adjustments as below, but for vigorous,
contact or water activities the pump will need to be disconnected.

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18: Insulin Pumps
Pump-on, reduced basal rate, ± extra carbohydrate
This is the strategy that tends to be most useful. A useful starting point is to reduce
the basal rate to half the usual rate for the duration of the exercise and for one hour
after, using the temporary basal rate feature. If the exercise is planned, the basal rate
can also be reduced for 1 to 2 hours beforehand. After vigorous and prolonged
exercise a reduction in the overnight basal rate may also be needed by 20-30% or
sometimes more.
During the exercise, additional carbohydrate (which is not bolused for) may also be
needed e.g., 8 to 15 grams (half to one exchange) every 30 minutes or so, often best
in the form of juice or sports drinks.

Bolus insulin adjustment with exercise


If vigorous exercise is going to be performed within 2 hours after a meal, a reduction
in that pre-meal bolus may also be needed. Start with a 25 % reduction and make
adjustments from there on the basis of what you learn from BGLs.

Pump-off for exercise


Most sets allow the pump to be easily removed for contact and vigorous sports or for
swimming. An alternative is to use a Sportguard case which protects the pump from
any damage.
The pump can usually be disconnected for up to 2 hours if exercising, without
problems. After one hour the BGL needs to be checked. If the BGL is rising then the
pump can be reconnected and the previous hours basal insulin given as a manual
bolus and the pump then disconnected for the next hour. On reconnecting again the
same may need to be done again. Unless exercise is mild only, the basal amounts of
insulin used here should be 50% of the usual doses.
Some people find it necessary to give a small bolus before disconnecting – the starting
point for this is also to give 50% of the basal insulin that would be infused over the
time period (1 or 2 hours).

Exercise examples:

Example 1:
Alison does 2 hours of dancing on Tuesday evening. Despite using 50% temporary
basal during, she still goes low during or afterwards. So, in addition she has 15g of
her dinner carbohydrate unbolused and uses 50% temp basal rate for 4 hours.
This works well for her for this activity.
Example 2:
When Tom goes bushwalking all day with the Scouts he finds it works well to reduce
to temporary basal of 60%, eat regular CHO, but only bolus for approximately
half of it.
Example 3:
Michael does basketball on Tuesday nights. He is often high at the end of the game
and corrects. Even though he has an extra snack before bed he is having late evening
hypos.
Advice – it is very important not to correct highs immediately after sport; often this
is a temporary high related to the adrenaline effect of sport and it settles by itself after
30 to 60 minutes after cooling off and having some water. Giving a correction bolus
at this time is usually not needed and can cause a major hypo. It is decided also to
use a temporary basal rate of 70% for 8 hours and adjust this as needed over the next
few weeks based on monitoring.

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18: Insulin Pumps

Pump discontinuation – using injections again


If you need to remove or stop using your pump for any reason, you need to start
having insulin injections by syringe or pens. This will be both rapid or short-acting
and long-acting injections, so you need to have these available for when they may be
needed.
All people on pumps need to carry rapid-acting insulin with a syringe or pen at all
times. Long-acting insulin needs to be readily available but not necessarily carried
with you.
It is very important that you keep a written or electronic record of your current pump
settings somewhere in case the pump breaks-down and has to be replaced. You need
to know these settings to re-program the pump. We give the following disconnection
advice:
1. Short periods of disconnection:
If disconnection from the pump is only going to be for part of a day, use doses of
rapid acting-insulin via a pen every 2 to 3 hours in a dose that gives you your basal
requirements for the next 2 to 3 hours, covers your carbohydrate intake and gives any
correction that is needed. In this case, use the rates and formulas from your pump.
2. Longer periods of disconnection:
If disconnection is necessary for a longer period, you will need to switch to a
combination of long-acting and rapid-acting insulin. You must always have supplies
of these available. Lantus or Levemir are both suitable long acting insulins. Remember
that these have a duration of action approaching 24 hours, so if you reconnect your
pump within 24 hours of a long-acting dose, basal rates may need to be run at or
close to 0 until the injected long-acting insulin effect has worn off (use temporary
basal rate feature, for example at about 10% temporary basal).
There are 2 ways to choose from. Calculations are made from the usual average total
daily dose (TDD) on the pump:
1. The preferred method, especially if pump will be resumed soon
• Give a dose of long acting insulin (Lantus or Levemir) once every 24 hours to
cover the basal insulin needs. This can be either before bed (usually better in
teenagers) or before breakfast (younger children). The long acting insulin dose is
about 40-50% of the usual average total daily dose (TDD) on the pump.
• For carbohydrate and corrections use a rapid acting insulin pen (NovoRapid
or Humalog) with the dose calculated using the carbohydrate and correction
factors that you use in your pump.
2. Alternate method; more suited if there will be a longer period of not using the
pump
• Use long-acting insulin to cover the basal needs, calculated in the same way as
above.
• The remaining 50-60% of the insulin total daily dose (TDD) is split into
3 pre-meal injections of rapid-acting insulin, as follows:

Pre-breakfast Pre-lunch Pre-dinner Usually once


daily - pre-bed
OR pre-breakfast
Rapid insulin
NovoRapid or Humalog 15-20% of TDD 15-20% of TDD 15-20% of TDD -----
Long-acting ----- ----- 40-50% of TDD

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18: Insulin Pumps
• This is a starting point only and adjustments are then made according to
monitoring, food intake, exercise etc. Extra monitoring is essential to guide these
adjustments, including overnight monitoring initially, since this is a significant
change to therapy.
• Some people find it necessary to split the total amount of the long acting insulin
into two doses (morning and night), but the above is a good starting point.
• Consult your diabetes team if you are not sure or having trouble adjusting
the doses.

Most frequent challenges for pump users


Having type 1 diabetes presents many challenges for young people and their families.
Here is a list of the commonest issues that arise with pump therapy. Knowing these
might help you avoid some problems.
1. Bolus problems – missed, late or poorly estimated
Forgetting to bolus is the commonest problem we see in insulin pump therapy,
especially in teenagers. There are many reasons for this relating to human nature
and behaviour, which need to be explored for each person. Missed boluses are a
major reason for poor diabetes control and families need to work to ensure
optimal bolusing. Every time a food bolus is missed, this is also a missed
opportunity for a correction bolus. If diabetes control is suboptimal and there are
significant missed boluses, this can lead to inappropriate adjustment of pump
basal rates or other settings – usually the bolusing problem should be addressed
first before making any other adjustments.
2. BGL testing
Not enough BGL testing is a common issue. A minimum of 4 BGL tests per
day is recommended, but preferably more. Testing before eating main meals is
always important because it allows a correction bolus to be added to the meal
bolus. Remember always to do extra testing around exercise, sick days and
occasionally at night. There is strong evidence that people who do more BGL
testing have better diabetes control.
Continuous glucose monitoring systems (CGMS) are now available which can
offer great benefits in profiling BGLs and reduce the number of finger-stick BGLs
required, although cost is currently a limiting factor.
3. Record keeping fatigue
Whichever pump is being used, it is important that BGLs and changes to pump
settings are being recorded somewhere. This may be electronically via a pump
download, on a computer spreadsheet or in Diabetes Record book. Any of these
methods can work well. The key reason for recording well is so that you can detect
patterns or problems as they emerge and make appropriate adjustments and also
so your diabetes team can advise you based on accurate and complete information.
4. Pump setting adjustments
Sometimes it can be difficult to know which settings need adjustment in your
pump over time – basal rates, carbohydrate boluses or correction boluses or
perhaps all. In general, as children grow, all insulin dose settings need to be
increased proportionally (i.e., increased basal rates, stronger carb ratios and
stronger ISF or correction settings). You will gain experience with this over time
and your diabetes team will continue to guide you. An important principle to
remember is that most settings and ratios should not vary widely from those
discussed earlier and most individuals do not require complicated rate settings.

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18: Insulin Pumps

5. Response to hyperglycemia and sick days


It is very important to have a practiced response to high BGLs and sick days, as
covered in other sections. This is important to avoid diabetic ketoacidosis and other
problems and hospital admissions.
6. Exercise
Unstable blood glucose levels (highs or lows) around exercise are a common problem,
but can be minimized with thought and planning according to the principles outlined
earlier. Extra BGL testing or CGMS around exercise will help you fine-tune the
approach for your particular activities. Your diabetes team can help you with this too.
7. Site and set issues
The most common problem is forgetting to change the set every 3 days. Data shows
that 3 days is the optimal time to leave a set in and then it should be changed.
After 3 days, insulin absorption characteristics change and BGLs become less stable.
If there are problems with the sets not sticking well or skin reactions, your diabetes
team can advise on other options.
8. Back-up plan for acute events
Have a plan for when something goes wrong. This includes knowing how to respond
quickly to high levels, sick days, hypoglycaemia etc. It also involves knowing who
to call if your pump fails and how to temporarily change over to injection therapy.
For pump technical issues, contact the pump company. For diabetes management
and health issues, contact your diabetes team.

Obtaining supplies and service back-up


Mostly supplies will be obtained via the NDSS through your Pharmacy or Diabetes
Australia. The supplies that will be routinely needed are:
• infusion sets
• reservoir syringes
• alcohol wipes
• pump batteries (some models don’t use standard batteries)
Some people may purchase additional special tapes if needed for sensitive skin etc.
Supplies are readily available and shipped quickly but try to always keep at least a
month ahead with your supplies to avoid running out. Insulin is provided on
prescription via your doctor and pharmacy as usual.
In the event of pump breakdown, damage or other malfunction you need to revert to
insulin injections without delay as per the “Pump Disconnection” information.
Contact the insulin pump company as soon as possible for technical support.
Usually it is possible to obtain a loan pump fairly quickly while your pump is being
repaired.

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18: Insulin Pumps
Common questions and answers

My 15-year-old son is erratic with his routines, often forgets his


? blood glucose testing and has overall poor diabetes control.
Should we buy him an insulin pump in an attempt to improve his
control?
No. Your son has difficulties with the basic routines of diabetes which
are unlikely to be helped by a pump. Using a pump is likely to be more
risky for him under these circumstances. Pump users need to be highly
motivated and prepared to do four to six BGLs per day or sometimes
more, and to work harder at their diabetes than average. Work with your
diabetes team to improve your son’s basic diabetes routines in an attempt
to get improved control on his insulin injections.

My 11-year-old daughter works hard at looking after her diabetes


? and usually has a HbA1c around 8 %. Her doctor is very happy
with her progress. She read about insulin pumps on the Internet
and would like to go on a pump. Should we do this?
Your daughter sounds well motivated and would be a good candidate for
an insulin pump. While her control level is reasonable, it is above the
recommended target. It is possible that this could be improved with a
pump and there would be other potential advantages in terms of
flexibility of routines, meals and lifestyle. Ask for more information from
your diabetes team. Even if she chooses not to go on a pump she should
be able to achieve good diabetes control with insulin injections.

Our son is now 13 and he has had unstable diabetes control for

? the 12 years that he has had it. We have worked really hard at
attempting to stabilise things and our doctor and diabetes
team have tried many different insulin combinations and doses.
He is always prepared to do as many tests as needed and is
generally good with his food. Could a pump help us?
You should discuss this with your doctor and diabetes team, but your son
sounds like a person who could benefit from a pump as long as he felt
this was good idea.

Caring for diabetes in children and adolescents 205


19: Complications

Chapter 19 Complications

Key Points
u T
 he risk of diabetes complications can be minimised by having
good long-term diabetes control
u Screening for complications is important to allow early detection
u Smoking increases the risk of complications

In this section we discuss the long-term complications that can occur with diabetes
and what can be done to reduce the risks. Older children and adolescents should be
made aware of these gradually, at a level appropriate to their understanding. Risk of
diabetes complications increases with longer duration of diabetes, poor blood glucose
control, high blood pressure, smoking and if there is a history in the family of
diabetes with complications. Complications are rare in children, but it is believed that
good diabetes control from early on is important and helps establish good long-term
habits. It is hoped that modern diabetes management techniques will mean that the
rate of complications will be much lower, but serious complications are still sometimes
seen in young people, especially when diabetes control is poor for long periods.

Minimising the risk of complications


• Try to keep the blood glucose levels within the recommended range as much
as possible.
• Ensure that your child has a haemoglobin A1c measurement approximately every
three months, as a guide to long-term control. There is now strong evidence that
for every degree of improvement in diabetes control, the risk of complications will
decrease.
• Make regular visits to your diabetes doctor or clinic. These should be every three
months but sometimes more often if control is not good.
• Your child should be physically active and maintain a healthy food plan.
• Discourage smoking. Smoking adds substantially to the risk of diabetes
complications.

Complications screening
Your doctor or diabetes educator will advise when this screening should start, but a
common guideline is :
• Once a child turns 9 years old and has had diabetes for 5 years
• 11 years and over and has had diabetes for 2 years
This is often a comprehensive screening program through one of the major
paediatric and adolescent diabetes centres and is usually recommended every
1 to 2 years. Complications screening allows the detection of very early signs of
complications. If these are detected early, changes can be made to management
that can stop them progressing or even reverse the complications.
Early detection and prevention are very important.

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19: Complications
Long-term complications
Complications occur in diabetes because of the effects of higher than normal blood
glucose levels on small blood vessels and nerves in the body and also because of the
long-term effects on large vessels. It is not fully understood how diabetes causes
complications but it seems to relate to effects of glucose binding irreversibly to small
vessels and nerves and affecting the way they work (a process called glycosylation).
Some brief information is provided here on possible long-term complications.

Eye problems

Retinopathy

The retina is the thin layer of tissue at the back of the eye which contains small blood
vessels and nerve endings for vision. Retinopathy refers to damage to the retina.
Minor changes to the retina are very common after 10 to 15 years of diabetes (non-
proliferative or background retinopathy), but this does not impair vision. Of more
concern is where there is progression to new blood vessel formation (called
proliferative retinopathy). This can threaten vision. The progression of retinopathy is
related to poor diabetes control and long duration of diabetes. It can be treated by
laser treatment or may require surgery for complications.
Screening for retinopathy is done by an eye doctor (ophthalmologist), optometrist or
a specialized diabetes complications service.

Chapter

19

Temporary blurred vision associated with changes in blood glucose levels

Large changes in blood glucose levels can cause blurred vision and difficulty in
focusing. This is common at the time of diagnosis when blood glucose levels which
have been running high are brought under control or after a period of stabilisation
where blood glucose levels are improved. The blurred vision does not last long and
usually disappears after a few weeks. It does not cause any long-term damage. Any
change in glasses prescriptions should be delayed for a while after large changes in
blood glucose levels.

Caring for diabetes in children and adolescents 207


19: Complications

Cataracts

Cataracts are a clouding of the lens and are more likely to occur in people with
diabetes but usually only in older people. These can be successfully treated by surgery.

Kidney problems (nephropathy)


The kidneys filter waste products from our bodies and pass them into the urine.
Diabetic nephropathy refers to kidney damage that can be associated with diabetes,
which again is a greater risk for people with poorly controlled diabetes over long
periods. Risks are greater in those with high blood pressure or who smoke. Advanced
nephropathy can cause kidney failure, requiring dialysis or kidney transplantation.
Major advances in detecting nephropathy mean that it can be detected at an early
stage and treated effectively. Screening is done by testing urine samples for leakage of
microscopic amounts of protein (called microalbuminuria). If early kidney damage is
detected, the treatment is to improve diabetes control as much as possible and
medications are given to slow or stop further kidney damage and to control blood
pressure.

Nerve problems (neuropathy)


Diabetic neuropathy refers to nerve damage associated with diabetes. Again, the risks
are highest in those with poorly controlled diabetes over long periods. Symptoms can
include numbness or pins and needles, especially in the feet and lower legs.
Neuropathy is uncommon in young people, but sensitive tests can detect minor
neuropathy in young people with only fairly short periods of poor control. In the
early stages neuropathy can be reversed with improved diabetes control. Screening for
neuropathy is part of some complications screening programs and is always
recommended if there is poor diabetes control.

Vascular disease
Older people with diabetes have an increased risk of heart attacks and strokes due to
narrowing of or blockages in large blood vessels. Risks are greater in people with
untreated high blood pressure, high blood cholesterol levels or who smoke. Large
vessel narrowing can also occur in the penis, causing impotence (problems getting an
erection) and in the legs, causing circulation problems.
Adolescents with type 2 diabetes or combination type 1 and type 2 diabetes are at a
greater risk of vascular disease at an earlier age.
Blood pressure should be measured at least annually and screening for high
cholesterol levels should occur every 1 to 2 years as part of complications screening.

Foot problems
Foot problems (due to decreased
blood flow or nerve problems)
do not occur in children and
adolescents. However, children
with diabetes should protect
their feet from injury because
scarring and other damage
could cause problems in later
life.

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19: Complications
Foot injuries, plantar warts, calluses, corns and in-grown toenails may be more of a
problem in children and adolescents with diabetes, since infections are more likely in
a high glucose environment and will be slower to heal. Proper care of the toenails is
important and shoes should be worn for sports and outside play. Any scarring on the
soles of the feet can increase the risk of long-term foot problems. Any foot injury
needs to be cared for properly.
It is important that problems with foot alignment (such as flat feet or high arches) are
detected in children with diabetes, since these may lead to an increased risk of later
foot problems and can be corrected if discovered early. A podiatrist assists with any
such problems.

Medical conditions that are of higher risk with


diabetes
People with diabetes are at an increased risk of some other conditions, particularly
thyroid gland problems, coeliac disease and more rarely, other autoimmune disorders
such as adrenal disease and rheumatoid arthritis. These are all conditions with a
similar cause to diabetes, where the body forms antibodies against certain tissues and
causes them not to work properly (called autoimmune conditions).

Thyroid problems
An underactive thyroid gland (hypothyroidism) occurs in 3 to 8 per cent of children
with diabetes. Symptoms and signs may include tiredness, weight gain, poor growth,
problems with diabetes control and an enlarged thyroid gland (goitre). It may be
difficult to detect without a blood test. If hypothyroidism occurs it is easily treated by
giving replacement thyroid medication in tablets.
Overactivity of the thyroid gland (hyperthyroidism) is also a slightly increased risk
with diabetes. Symptoms and signs may include weight loss, nervousness, increased
appetite, tremor, problems with diabetes control and an enlarged thyroid gland
(goitre). This also can usually be corrected by medications taken in tablets.
Most diabetes centres screen for thyroid problems with a simple blood test every
2 years in children with diabetes.

Coeliac disease
Coeliac disease occurs in about 5 per cent of children with diabetes and is another
antibody-related (autoimmune) condition in which the body forms antibodies against
the protein gluten which is found in the grains wheat, rye, barley, oats and triticale.
These antibodies cause damage to the bowel lining which may cause poor absorption
of food, poor growth, unstable diabetes and possible development of bowel tumours
in later life. In many children, no symptoms may be evident except unstable diabetes
control so most diabetes centres screen for coeliac disease at the time of diabetes
diagnosis and with a blood test every 2 years or so.
Coeliac disease can be treated by diet changes which involve avoiding the grains
containing gluten. This treatment is very effective, but adds an extra difficulty to
diabetes care. Advice from a dietitian experienced in the area is essential.

Caring for diabetes in children and adolescents 209


19: Complications

Common questions and answers

My seven-year-old has had diabetes for two years. Does he need


? his eyes checked?
An eye check is generally not recommended in children under 9 years
until they have had diabetes for five years. If your child has eye symptoms
at any time, a check should be done, but these would be unlikely to be
due to diabetes. Sometimes temporary blurring of vision can occur when
blood glucose levels are changing a lot, but this soon goes away.

My 15-year-old daughter has had diabetes for ten years and poor
? control for two years and has some early eye changes and
slight nerve changes in the feet. Is this serious?
These are warning signs of the diabetes starting to affect the body and
these could progress to become more serious. The good news is that early
problems can often be stopped or reversed if control is improved, so this
is the most important thing. Any improvement in control, even if only
small, is of benefit.

My 16-year-old son asks why he should work hard at his diabetes

? when he is going to get complications anyway.


This is a rather pessimistic attitude, and is sometimes used as an
excuse to avoid good diabetes care. Be open and honest with your son.
You need to say to him that diabetes complications can occur with long
duration of diabetes or poor control, but that risks are minimised with
good control and can be decreased with any improvement in control.
Also be optimistic that with modern diabetes management, long-term
complications are expected to be less, and that major improvements in
management or even a cure are real possibilities in the next decade
or so.

210 Caring for diabetes in children and adolescents


20: Research and Future of Diabetes Management
Chapter 20 R
 esearch and Future of
Diabetes Management
Around the world, major research efforts and funding are being invested in diabetes,
with the aims of:
• finding a cure for diabetes
• identifying those at risk for diabetes and preventing the onset of diabetes
• improving management techniques until a cure is found. This includes:
• development of new and better insulins
• development of better ways of giving insulin (insulin delivery)
• development of better blood glucose monitoring equipment, including
non-invasive blood glucose monitoring (i.e., measuring the blood glucose
without having to do a finger prick) and more use of continuous glucose
monitoring
• minimising the risk of long-term complications.

Finding a cure for diabetes


A cure for diabetes would be a treatment method that replaced the insulin-producing
capabilities of the pancreas. This would mean that insulin injections would no longer
be required and blood glucose levels would be able to stay in the normal range.
Currently, the most promising research is in cell replacement in which insulin
producing cells would be injected into people with diabetes. These take over the Chapter
glucose-sensing and insulin-producing functions of the pancreatic beta cells.
These replacement cells could be beta cells from humans or animals, or may be newly 20
created (bio-engineered) cells with the properties of beta cells. There is much interest
in the potential of stem cell research as a source of these cells for a diabetes cure.
Much progress is being made in this field, but the main problems are with long-term
survival since the cells are easily rejected. Beta cell transplantation is still a highly
experimental area and is not yet suitable for trial in children or adolescents.
Bio-engineered cells and stem cells are showing promise but also require much more
development.
Other areas of research include using immune modulating drugs to try to extend the
remission phase (“honeymoon period”) by preventing ongoing destruction of the
remaining beta cells immediately after diagnosis.
The artificial mechanical pancreas has also been a dream of modern technology and
some progress is occurring in this area, particularly with external systems. Limiting
factors to be overcome are the reliability and accuracy of continuous glucose
monitoring systems, the time taken for insulin to be injected and start to act and the
lack of other adjusting (counter-regulating) hormones such as glucagon. Implanted
artificial systems have the additional problems associated with any long-term
implanted devices.
Whole pancreas transplants are possible, are often successful and may lead to people
coming off insulin injections. However, this procedure has significant risks of
permanent health problems or death. It is usually only available to adults with
advanced diabetes complications with kidney failure who also require a kidney
transplant. Long-term anti-rejection drugs are needed that can have many side-
effects. As yet, it is not a suitable option for children and young people.

Caring for diabetes in children and adolescents 211


20: Research and Future of Diabetes Management

Diabetes prevention
Medical researchers have aimed for a long time to identify people who may be at risk
of diabetes (pre-diabetes) and find a way of preventing diabetes developing.
This research involves finding out more about the cause of diabetes, finding ways
to predict who may get diabetes and trying treatments that could prevent the onset
of diabetes.
Most studies have concentrated on screening relatives of people with diabetes by
antibody tests and other blood tests. Where high risk factors are found, experimental
treatments have been tried to prevent diabetes. At present, no preventive treatment
has been proven to be safe and effective. Some are showing promise and active trials
are continuing. Routine testing of relatives of people with type 1 diabetes is likely to
become more routine. Screening of all children would be a much more difficult task,
but may be possible in the future.
You should discuss with your diabetes specialist the pros and cons of having other
children in your family tested for diabetes risk. This is likely to be a rapidly developing
area of research.

Improving management techniques


Until a prevention and cure are available for diabetes, it is likely that there will be
many improvements in the way it is treated. These are likely to include:
• New insulins: Manufacturers are continually working on new insulins that
work better or have more suitable action profiles. New rapid-acting insulins
(Humalog, Novorapid and Apidra) and new long-acting insulins (Lantus and
Levemir) have been released over the past few years and been helpful for
many people. Other new insulins are under development.
• Inhaled insulin: Techniques have been developed that allow short-acting insulin
to be inhaled into the lungs. These have been under clinical trial in patients with
both type 1 and type 2 diabetes and results have shown equivalence in diabetes
control, however concerns remain about the long-term effects upon lung
function, cost and convenience of use.
• Insulin pumps: Insulin pumps are discussed in chapter 18. Improved pump
technology and knowledge are making this an increasingly popular form of
therapy although it does not suit everyone. Pump manufacturers are making
major efforts to develop and refine technologies in which continuous or frequent
automatic blood glucose readings feed into insulin pumps and make
a semi or fully automated system.
• Blood glucose measurement technology:
Continuous glucose monitoring (CGM)
Technologies that allow very frequent or continuous BGL readings have been
developed and are currently available as discussed in chapters 7 and 18. Users can
receive information about their tissue glucose levels every 5 minutes. Much greater
information is provided on blood glucose profiles and alarms can be set for rate of
change and high and low BGLs. Currently, the cost of these technologies is relatively
high, although we can expect to see greater use and further technical advances over
the coming years.

212 Caring for diabetes in children and adolescents


20: Research and Future of Diabetes Management
Non-invasive blood glucose monitoring
Major efforts are being put into new and easier ways of testing the blood glucose.
This is called non-invasive or minimally invasive blood glucose monitoring. It would
be able to measure the blood glucose levels without having to prick the finger and
may be a reality within a few years.
• Prevention and treatment of complications: New drugs and other ways of
preventing and treating diabetes complications are in constant development.
• Information and education: It is a continuing goal in Australia and other
countries to provide better information and education for people with diabetes.
• Psychological research: More research is needed about the way psychological
aspects interact with diabetes management and the psychological impact of
chronic conditions such as diabetes.

Caring for diabetes in children and adolescents 213


21: Resources

Chapter 21 Resources
A wide variety of sources of additional information are available. Your diabetes team
will advise you which additional resources they recommend.
Here are some commonly used sources of information:

Diabetes organisations
Diabetes Australia
Diabetes Australia is represented in all states of Australia – contact numbers can be
obtained from your diabetes centre or telephone directory services. A number of
support services are available.

Juvenile Diabetes Foundation Australia (JDFA)


JDFA is represented in all states – contact numbers can be obtained from you
diabetes centre or telephone directory services.

Your local hospital health information unit and diabetes centre


Your local team will advise of which resources are recommended and where to obtain
them

The Internet
There is a large amount of information about diabetes on the Internet. Much of this
is useful and interesting, but be aware that the quality of information can be very
variable. Always look at the organisation that is running the site as this will be a guide
to how reliable the information is likely to be. For example, sites such as
the American Diabetes Association, Juvenile Diabetes Foundation or those of major
children's hospitals or universities are likely to be of high quality. A lot of what you
may read on the Internet will apply to type 2 diabetes, so be careful to distinguish
this.
If you come across material you don't understand or that disagrees with what you
have been told, discuss this with your diabetes team. If you don't have access to the
Internet, don't worry. New developments and information are always available
through your diabetes team who keep in close touch with the latest information and
technology from around the world.
Some have already been listed in the relevant sections of this resource and we have
listed a number below. You will find many others if you look.
www.diabeteskidsandteens.com.au
The Diabetes Australia NSW website for kids and teens with type 1 diabetes

www.jdrf.org.au
The Juvenile Research Foundation of Australia website

www.diabetes.org
The American Diabetes Association website

214 Caring for diabetes in children and adolescents


21: Resources
www.diabetes.niddk.nih.gov
The National Diabetes Information Clearinghouse of the USA. A service of the
National Institutes of Health.

www.diabetes.org.uk
The website of Diabetes UK.

www.kidsdiabetes.org.au
The website of this book.

www.sweet.org.au
Sweet is an on-line site designed to assist with transition from
paediatric to adult services.

www.gyst.org.au
Another website for those approaching transition. The various life issues
at this stage are covered in a fun award-winning video with a great soundtrack
showcasing some latest Australian musical talent.

Books
Numerous books are available about all aspects of diabetes and its management.
Your diabetes team will advise which they recommend for local use.
Chapter

21
Videos / DVDs
Several on-line videos which you may find useful are referred to in this resource and
are summarized here:

Diabetes Type 1 and Insulin Production


Etsuko Uno and Drew Berry, Walter and Eliza Hall Institute of Medical
Research, 2009
This animation illustrates how insulin is normally produced in the body and how
its production is destroyed in type 1 diabetes
www.wehi.edu.au/wehi-tv/dna/index.html

Here we go ‘round the Mulberry bush- Positive parenting of toddlers with


diabetes
ERC Media, Educational Resource Centre, Royal Children’s Hospital,
Melbourne, 2002.
This video focuses less on the physiological aspects of the condition and more on the
issues of coping day to day with a toddler with diabetes. It is recommended viewing
for parents, families and friends of young children who have been recently diagnosed.
View via the link at www.kidsdiabetes.org.au

Caring for diabetes in children and adolescents 215


21: Resources

Loco parentis – Managing diabetes at primary school


ERC Media, Educational Resource Centre, Royal Children’s Hospital,
Melbourne, 2004.
In this video, parents, students, teachers and health professionals share their insights
and tips for successful diabetes management at primary school and pose new
questions about where the teaching profession is heading in terms of taking
on additional responsibility for the medical needs of students.
View via the link at www.kidsdiabetes.org.au

Loco parentis – Managing diabetes at secondary school


ERC Media, Educational Resource Centre, Royal Children’s Hospital,
Melbourne, 2004.
This video discsuses similar issues, but in the secondary or high school
environment.
View via the link at www.kidsdiabetes.org.au

GYST – a life guide for young people on the move


ERC Media, Educational Resource Centre, Royal Children’s Hospital,
Melbourne, 2006.
GYST is a fresh, new holistic approach to the complex process of transition.
It is a comprehensive ‘life guide’ covering all the most important aspects of getting set
up in adult life with specific information for young people living with diabetes. It is
packed full of valuable information that every young person needs to know.
www.gyst.org.au

WWYCD (Wicked) – Your Get-Up-and-Go Guide to Living with Type 1 Diabetes


ERC Media, Educational Resource Centre, Royal Children’s Hospital,
Melbourne, 2009.
WWYCD. clearly lays out the benefits of maintaining regular exercise and,
when motivation is low, encourages young people to consult the one person who can
truly assist them to develop and maintain a healthy fitness regime for life.
View via the link at www.kidsdiabetes.org.au

Spreading our wings – the diabetes camp experience


ERC Media, Educational Resource Centre, Royal Children’s Hospital,
Melbourne, 2005.
Experiences of diabetes camps told from the parents and child's or adolescent's
perspective
View via the link at www.kidsdiabetes.org.au

216 Caring for diabetes in children and adolescents

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